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!
Tuesday, August 26, 2014
Wednesday, August 6, 2014
My "imperfect," but memorable, vacation
Vacation is over, and my long awaited appointment with Dr. M regarding clinical trials was last week. So lots of news to report!
Danny & I had a nice time on our vacation DESPITE our circumstances. It helps to have a sense of humor! But sometimes it's difficult to find humor in a situation until after it's past. If you recall from my last post, we booked a little cabin in the woods of the Hill Country while the kids were at camp all week. We prefer a vacation rental that's secluded, as opposed to one that's in a row of cabins or grouped closely with others such as part of a resort or campground-- especially when it's just the two of us and not the whole family. I, being the executive planner of all family vacations and getaways, take pride in selecting just the right rental. Good location, yet secluded. Clean, but a little rustic is acceptable. Equipped. Must have a kitchen that allows us to do some cooking. An outdoor grill is nice, too! Although we love to eat out, it's just not financially feasible to eat out for every meal, such as what you pretty much have to do when you stay in a hotel. Over the years, we have stayed in a lot of rentals, so perhaps we are cabin snobs. But I like to think that we are experienced renters and have a good idea of which amenities are more or less standard. All of that said, I tend to be my own worst critic of the rentals I exhaustively research before reserving.
Upon entering the road/driveway of the cabin, we were excited as usual. We were off the beaten path in small-town Texas. As the cabin came into view, the first thing I noticed was a small, about 2-feet-tall concrete gargoyle "welcoming" us from the garden. Sorry if you're a fan of gargoyles, but I am not! They make me say "Ewww!" We press on. The cabin is quite cute and very secluded. Great! We see the hot tub, Adirondack chairs with table & patio umbrella, and toward the property's cleared perimeter, two chaise lounges. Wait! What's that beyond the lounge chairs?? OMG it's a GIANT gargoyle! No lie. Standing "guard" behind the chaises is a four-foot concrete gargoyle -- facing the chairs! I was so creeped out! Needless to say, we never sat in the chaise lounges, the entire 4-night stay. Who could relax with that monster watching from behind??
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However, the cabin's interior is very nice. Adorable, in fact. Perfectly-sized for two. There are some thoughtful little touches, as well, such as homemade cookies & granola, milk & OJ in the fridge, coffee & accoutrements, dvd's, beach towels for hot tubbing, and spa robes to name a few. I'm thinking "Aww, maybe this place is really not that bad after all."
We later discovered that the kitchen, although cute, had no stove! For cooking, it had only a microwave and portable electric burner. :( There goes any thought of cooking any meals. Thankfully neither of us can eat as much as we used to, so we got by just fine on sandwiches & snacks and the occasional eat out.
But this cabin wasn't done with us yet! There was a hornet nest on the cabin's corner near the porch/door which was also near the Adirondack chairs -- mean & vicious hornets that attacked us whenever we tried to enter or exit. Danny found some spray inside and sprayed them daily, because every day there were always more! Consequently we had to buy more hornet spray to keep up with their daily fortifications of the nest.
And the kicker: we were awakened nightly by the sound of a mouse/rat inside the wall of the bedroom closet! The interior walls appeared well-sealed, so we didn't think there was a possibility of the critter visiting us in bed, but he sure was trying to chew or claw his way out! In between the chewing/clawing sounds we could hear his squeakity-squeaks. Eww! Fortunately for our sleep needs, we only heard him when the air conditioner wasn't running, which in the Texas summer heat wasn't really that often.
Danny found a mousetrap in the water heater closet (in the bedroom,) so between that and the hornet spray it was evident that the cabin owner was aware of the issues. We placed a piece of cheese in the trap and it was gone the next morning, trap unsprung, there being no trace of the critter that ate the cheese.
Our plans for this vacation were to relax and enjoy our time together. We also planned on some driving tours, site-seeing, and perhaps some historic site or museum visits. We knew that in my current state of weakness we wouldn't be able to go hiking or do other physically demanding activities. We visited the LBJ Ranch (Lyndon B. Johnson National Historic Park) and took a tour... And I got a stamp for my National Park Passport -- Yay! (Yes, I'm a national park enthusiast, collecting stamps from every National Park Service site I visit.) Anyway ... interesting place, this "Texas White House"!
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I could move the foot, and even walk on it, though painstakingly, so Danny thought it probably wasn't broken. I couldn't be sure, but the crunch sound had me convinced that it was. Shortly down the road, he very sweetly stopped the truck so I could photograph some pretty flowers. To move us on from the sadness! He knows that I always like to snap a pic of at least one example of local flora, wherever we may be visiting. (Oh and similarly, we like to see how many different animals we can spot when we're on vacation. This trip: deer, rabbits, roadrunners, giant lizards, hummingbirds, and hornets! I know ... we're nature geeks.) Here's my favorite cheer-me-up flower photo taken just after "the fall."
We were well into the nature preserve, so it was going to be quite some time before we were out, and even then, quite some time before we were back at the cabin. My foot still hurt, but it wasn't excruciating ("see, it can't be broken.") We pulled off to a scenic overlook gazebo kinda place called "Sunset Deck," and the view didn't disappoint, although we weren't there at sunset. We were higher up than we thought we were, and could see the snaking Colorado river and Lake Travis in the distance. Of course a picture, as is often the case, can't do it justice. Here we enjoyed a private, tranquil (and delicious) picnic lunch before heading back to Gargoyle Cabin.
It was a loooong drive to our temporary home. Once there, I removed my shoe to discover a large egg-shaped area of swelling and a big ugly bruise on the outer portion of my right foot. For the remainder of the vacation, I kept it elevated and applied ice packs to it as often as possible. We watched movies and chilled more than we had planned. We were good with that!
For the last night that the kids were away at camp, I had booked us a one-night stay at a little inn in Round Top, Texas, so we wouldn't have to drive so far to pick them up in the morning. We were pleasantly surprised at the beautiful grounds, charming cabin, and historic Lutheran church next door to the inn. No gargoyles!
Danny & I had a nice time on our vacation DESPITE our circumstances. It helps to have a sense of humor! But sometimes it's difficult to find humor in a situation until after it's past. If you recall from my last post, we booked a little cabin in the woods of the Hill Country while the kids were at camp all week. We prefer a vacation rental that's secluded, as opposed to one that's in a row of cabins or grouped closely with others such as part of a resort or campground-- especially when it's just the two of us and not the whole family. I, being the executive planner of all family vacations and getaways, take pride in selecting just the right rental. Good location, yet secluded. Clean, but a little rustic is acceptable. Equipped. Must have a kitchen that allows us to do some cooking. An outdoor grill is nice, too! Although we love to eat out, it's just not financially feasible to eat out for every meal, such as what you pretty much have to do when you stay in a hotel. Over the years, we have stayed in a lot of rentals, so perhaps we are cabin snobs. But I like to think that we are experienced renters and have a good idea of which amenities are more or less standard. All of that said, I tend to be my own worst critic of the rentals I exhaustively research before reserving.
Upon entering the road/driveway of the cabin, we were excited as usual. We were off the beaten path in small-town Texas. As the cabin came into view, the first thing I noticed was a small, about 2-feet-tall concrete gargoyle "welcoming" us from the garden. Sorry if you're a fan of gargoyles, but I am not! They make me say "Ewww!" We press on. The cabin is quite cute and very secluded. Great! We see the hot tub, Adirondack chairs with table & patio umbrella, and toward the property's cleared perimeter, two chaise lounges. Wait! What's that beyond the lounge chairs?? OMG it's a GIANT gargoyle! No lie. Standing "guard" behind the chaises is a four-foot concrete gargoyle -- facing the chairs! I was so creeped out! Needless to say, we never sat in the chaise lounges, the entire 4-night stay. Who could relax with that monster watching from behind??
However, the cabin's interior is very nice. Adorable, in fact. Perfectly-sized for two. There are some thoughtful little touches, as well, such as homemade cookies & granola, milk & OJ in the fridge, coffee & accoutrements, dvd's, beach towels for hot tubbing, and spa robes to name a few. I'm thinking "Aww, maybe this place is really not that bad after all."
We later discovered that the kitchen, although cute, had no stove! For cooking, it had only a microwave and portable electric burner. :( There goes any thought of cooking any meals. Thankfully neither of us can eat as much as we used to, so we got by just fine on sandwiches & snacks and the occasional eat out.
But this cabin wasn't done with us yet! There was a hornet nest on the cabin's corner near the porch/door which was also near the Adirondack chairs -- mean & vicious hornets that attacked us whenever we tried to enter or exit. Danny found some spray inside and sprayed them daily, because every day there were always more! Consequently we had to buy more hornet spray to keep up with their daily fortifications of the nest.
And the kicker: we were awakened nightly by the sound of a mouse/rat inside the wall of the bedroom closet! The interior walls appeared well-sealed, so we didn't think there was a possibility of the critter visiting us in bed, but he sure was trying to chew or claw his way out! In between the chewing/clawing sounds we could hear his squeakity-squeaks. Eww! Fortunately for our sleep needs, we only heard him when the air conditioner wasn't running, which in the Texas summer heat wasn't really that often.
Danny found a mousetrap in the water heater closet (in the bedroom,) so between that and the hornet spray it was evident that the cabin owner was aware of the issues. We placed a piece of cheese in the trap and it was gone the next morning, trap unsprung, there being no trace of the critter that ate the cheese.
Our plans for this vacation were to relax and enjoy our time together. We also planned on some driving tours, site-seeing, and perhaps some historic site or museum visits. We knew that in my current state of weakness we wouldn't be able to go hiking or do other physically demanding activities. We visited the LBJ Ranch (Lyndon B. Johnson National Historic Park) and took a tour... And I got a stamp for my National Park Passport -- Yay! (Yes, I'm a national park enthusiast, collecting stamps from every National Park Service site I visit.) Anyway ... interesting place, this "Texas White House"!
Shortcomings aside, the area around the cabin did offer a nice little walking trail through grasses, cacti, and oaks with a divergent pathway to a scenic road, country fence, and a prairie with grazing deer -- nice!
Next we took a drive to Marble Falls, a town we've never before visited. We ate at a restaurant that overlooked Lake LBJ. Wow! Gorgeous views!! Average food.
We checked out the nearby Balcones Canyonlands Natural Wildlife Refuge after reading about it online. Turns out that this refuge was created entirely because of an endangered bird in the area! I find this to be a little nutty, but what do I know?! It's a beautiful area, and there are hiking trails which again, we were unable to even attempt. Can you tell how sad that makes me?! At some point we found ourselves on this narrow winding road that followed a creek. We stopped at a scenic area where Cow Creek was crystal clear and there was a small cascading waterfall. Looked like a great swimming hole and we had it all to ourselves, although we did not swim. So peaceful and beautiful. We snapped a few pictures and admired the beauty of God's creation, then headed back to the truck.
And then, IT happened. As we were walking back to the truck, my ankle gave way on the uneven ground, causing my foot to roll outward. I heard and felt a c-c-crunch on the outer portion of my foot. I cried and cried and cried, not because of the pain (even though I did have pain,) but because this was my life now. My once active vacations, reduced to driving tours that couldn't even include a stop at a picturesque creekside location without incident. I believe I bellowed out something like "This is SOOOOOOOO SAAAAAAAAD!!" Never having broken a bone or even sprained anything before, the reality of our new existence hit us both like a ton of bricks and we BOTH cried for several minutes. Weakened by neuropathy caused by a chemo drug that didn't even work, my ankle gave out on the slightest uneven ground, causing me to break a bone in my foot. I repeat, all from a drug that didn't even work on my cancer! Ugggh.
I could move the foot, and even walk on it, though painstakingly, so Danny thought it probably wasn't broken. I couldn't be sure, but the crunch sound had me convinced that it was. Shortly down the road, he very sweetly stopped the truck so I could photograph some pretty flowers. To move us on from the sadness! He knows that I always like to snap a pic of at least one example of local flora, wherever we may be visiting. (Oh and similarly, we like to see how many different animals we can spot when we're on vacation. This trip: deer, rabbits, roadrunners, giant lizards, hummingbirds, and hornets! I know ... we're nature geeks.) Here's my favorite cheer-me-up flower photo taken just after "the fall."
We were well into the nature preserve, so it was going to be quite some time before we were out, and even then, quite some time before we were back at the cabin. My foot still hurt, but it wasn't excruciating ("see, it can't be broken.") We pulled off to a scenic overlook gazebo kinda place called "Sunset Deck," and the view didn't disappoint, although we weren't there at sunset. We were higher up than we thought we were, and could see the snaking Colorado river and Lake Travis in the distance. Of course a picture, as is often the case, can't do it justice. Here we enjoyed a private, tranquil (and delicious) picnic lunch before heading back to Gargoyle Cabin.
It was a loooong drive to our temporary home. Once there, I removed my shoe to discover a large egg-shaped area of swelling and a big ugly bruise on the outer portion of my right foot. For the remainder of the vacation, I kept it elevated and applied ice packs to it as often as possible. We watched movies and chilled more than we had planned. We were good with that!
For the last night that the kids were away at camp, I had booked us a one-night stay at a little inn in Round Top, Texas, so we wouldn't have to drive so far to pick them up in the morning. We were pleasantly surprised at the beautiful grounds, charming cabin, and historic Lutheran church next door to the inn. No gargoyles!
And finally, near the end of our little getaway, we dug in to some world-famous pie at Royer's Round Top Café! Yummy!
Just fyi ... the lady behind me in this pic is eating quail. I know this because her plate smelled so delicious when it was delivered that I had to ask what it was. Umm, no thanks, just gimme my pie & ice cream please!
The foot: fractured 5th metatarsal. Doctor's orders: boot and rest for 4 weeks. Who has time for that?! Thankfully, no cast or surgery required. Woohoo!
Wow, I went on so long about the vacation, I've run out of time for a cancer update. Soon, I promise!
As always, thanks for reading. Hope you enjoyed the pictures. I've decided to start including more of them so you guys can put faces to the names.
Thursday, July 17, 2014
New Plan ... Renewed Hope!
Interestingly, I came upon a Bible verse that is so fitting to my current struggles, it's uncanny ... but NOT coincidental! Actually it's more like a prayer. Isaiah 35:3 says "Strengthen the feeble hands, steady the knees that give way;" Yes Lord!
My visit with Dr. P this week went well. I was sort of dreading it, because I anticipated having to be firm regarding my decision to discontinue the Eribulin. That's a lot of weight for this cancer patient to carry: stopping chemo that my oncologist deemed was (partially) effective on my cancer. Fortunately, I didn't have to do it! Dr. P came in to the exam room and said she really thought I needed to get off of Eribulin since the neuropathy it has caused is interfering so much with my activities of daily living. She went on to say that all of the remaining chemotherapy drugs available to me were just as likely or more likely to cause peripheral neuropathy. So, she recommended that I see Dr. M at the MD Anderson main campus downtown to discuss clinical trial options. She had already spoken to her about me, and an appointment was already scheduled! Why did I ever doubt my medical team at the world's best cancer treatment center?? Or rather, why did I ever doubt that my God HAS this??
Although I'm nervous about the clinical trial ... what kind of drug will it be, what will the schedule be like, what side effects will I experience, etc.... I have renewed hope that perhaps it will work on the cancer! I've had pleural effusions in the past that have completely resolved after a medication/chemo change. If that is what God has in mind, He certainly has the power to make it happen!
As luck would have it, my appointment with Dr. M was scheduled during the one week of Summer that we have a vacation planned. A modest, one-bedroom vacation rental cabin in the Texas Hill Country while all three kids are at camp. Just me & Danny! I've grudgingly accepted the fact that our vacations can no longer be of the active type that I've grown so accustomed to. There won't be any hiking or biking, that's for sure! BUT what it can be is a relaxing time "away from it all" in the company of my favorite man! A much needed respite from cancer treatments, tests, scans, needlesticks and doctor visits. Woohoo!
The controlling side of me was at first upset that the appointment couldn't be moved up to THIS week, and that the next available was all the way to Thursday of the following week. A quick calculation after consulting my extremely thorough and meticulously accurate "Cancer Treatment" note on my iPhone told me that by the time I see Dr. M, I will have received NO cancer treatment for 4 weeks! (cue alarm sounds and lights flashing and a woman's recorded voice stating "Too long! Too long! Too long!) But then I remembered that I am in the hands of my savior and that maybe, just maybe, He wants me to have a nice relaxing vacation and spend some quality time with my husband!
As I mentioned in my previous post, I am SO THANKFUL that Danny is no longer working at the accounting firm. Yes, we needed the extra money, but having him here (at home and at The Pink Ribbon Shop) is so worth it. With all of my cancer-related issues, I appreciate him having the ability to accompany me to my treatments and doctor visits. Since the position he had was through a temporary employment agency, he simply completed his temp contract and called it a day.
I am also thankful that it's Summer. The kids do have activities, but without the added stress and full days of school, it's all a lot more laid back and enjoyable. One of the things I'm currently enjoying, despite my multitude of neuropathy symptoms, is learning to "sign" songs for our church. My daughter Christa has been interested in sign language for many years, having first taken a few "sign language dance" classes, then signing in church under the tutelage of another beautiful young woman, and most recently taking two ASL courses in high school as her foreign language requirements. Tragically, that young woman who began the sign language ministry at our church took her own life last Summer. This was devastating to our congregation, as you can imagine. In honor of Anne, Christa decided to carry on her "Hands Held High" ministry.
Hands Held High appealed to me because firstly, it was always so beautiful and powerful when Anne did it. Then when Christa joined her it was exceptionally so (proud mom talking)! Secondly, I thought "I'd like to try that." Since it was clear that I wouldn't be taking any more dance classes or running any more half marathons, I thought this was something I COULD do. It was Easter of 2013 when I signed for the first time to Big Daddy Weave's "Redeemed." It was an amazing experience, and I am grateful for that time of getting to know Anne's beautiful heart before her passing.
Anyhoo, what I am really enjoying about signing this Summer is getting to spend some one on one time with Christa. I still suffer from chemobrain (at least that's what I blame it on) and so I require a LOT of practice and instruction. So glad I live in the same house as the teacher! She is an awesome, dedicated, leader, and she is so beautiful to watch ... full of emotion. Sometimes it's just me & her signing and the praise team & band singing/playing, but interest is growing and this next time (8/3) there will be 5 of us signing, including her sister! Bethany has agreed to take on a very small part, the introduction to the song, before stepping away and taking her usual place on the drums (where, I might add, she also displays exceptional talent!). We will be signing to "The Well" by Casting Crowns. If you're not familiar with that song, well, look it up. It has amazing lyrics and hopefully we will be able to do those lyrics justice and bring them even more to life, help the words reach people's hearts, with sign. Exciting!
I always seem to have a really low point in my attitude after receiving bad scan news. This is normal! But thankfully, through prayer and the help (and sometimes merely the presence) of family, I eventually find my way to hopefulness or at the least, peace.
"Come to me, all who are weary and burdened, and I will give you rest." Matthew 11:28.
P.S. Yes, I've enlarged the font. Guess my eyes are getting old.
My visit with Dr. P this week went well. I was sort of dreading it, because I anticipated having to be firm regarding my decision to discontinue the Eribulin. That's a lot of weight for this cancer patient to carry: stopping chemo that my oncologist deemed was (partially) effective on my cancer. Fortunately, I didn't have to do it! Dr. P came in to the exam room and said she really thought I needed to get off of Eribulin since the neuropathy it has caused is interfering so much with my activities of daily living. She went on to say that all of the remaining chemotherapy drugs available to me were just as likely or more likely to cause peripheral neuropathy. So, she recommended that I see Dr. M at the MD Anderson main campus downtown to discuss clinical trial options. She had already spoken to her about me, and an appointment was already scheduled! Why did I ever doubt my medical team at the world's best cancer treatment center?? Or rather, why did I ever doubt that my God HAS this??
Although I'm nervous about the clinical trial ... what kind of drug will it be, what will the schedule be like, what side effects will I experience, etc.... I have renewed hope that perhaps it will work on the cancer! I've had pleural effusions in the past that have completely resolved after a medication/chemo change. If that is what God has in mind, He certainly has the power to make it happen!
As luck would have it, my appointment with Dr. M was scheduled during the one week of Summer that we have a vacation planned. A modest, one-bedroom vacation rental cabin in the Texas Hill Country while all three kids are at camp. Just me & Danny! I've grudgingly accepted the fact that our vacations can no longer be of the active type that I've grown so accustomed to. There won't be any hiking or biking, that's for sure! BUT what it can be is a relaxing time "away from it all" in the company of my favorite man! A much needed respite from cancer treatments, tests, scans, needlesticks and doctor visits. Woohoo!
The controlling side of me was at first upset that the appointment couldn't be moved up to THIS week, and that the next available was all the way to Thursday of the following week. A quick calculation after consulting my extremely thorough and meticulously accurate "Cancer Treatment" note on my iPhone told me that by the time I see Dr. M, I will have received NO cancer treatment for 4 weeks! (cue alarm sounds and lights flashing and a woman's recorded voice stating "Too long! Too long! Too long!) But then I remembered that I am in the hands of my savior and that maybe, just maybe, He wants me to have a nice relaxing vacation and spend some quality time with my husband!
As I mentioned in my previous post, I am SO THANKFUL that Danny is no longer working at the accounting firm. Yes, we needed the extra money, but having him here (at home and at The Pink Ribbon Shop) is so worth it. With all of my cancer-related issues, I appreciate him having the ability to accompany me to my treatments and doctor visits. Since the position he had was through a temporary employment agency, he simply completed his temp contract and called it a day.
I am also thankful that it's Summer. The kids do have activities, but without the added stress and full days of school, it's all a lot more laid back and enjoyable. One of the things I'm currently enjoying, despite my multitude of neuropathy symptoms, is learning to "sign" songs for our church. My daughter Christa has been interested in sign language for many years, having first taken a few "sign language dance" classes, then signing in church under the tutelage of another beautiful young woman, and most recently taking two ASL courses in high school as her foreign language requirements. Tragically, that young woman who began the sign language ministry at our church took her own life last Summer. This was devastating to our congregation, as you can imagine. In honor of Anne, Christa decided to carry on her "Hands Held High" ministry.
Hands Held High appealed to me because firstly, it was always so beautiful and powerful when Anne did it. Then when Christa joined her it was exceptionally so (proud mom talking)! Secondly, I thought "I'd like to try that." Since it was clear that I wouldn't be taking any more dance classes or running any more half marathons, I thought this was something I COULD do. It was Easter of 2013 when I signed for the first time to Big Daddy Weave's "Redeemed." It was an amazing experience, and I am grateful for that time of getting to know Anne's beautiful heart before her passing.
Anyhoo, what I am really enjoying about signing this Summer is getting to spend some one on one time with Christa. I still suffer from chemobrain (at least that's what I blame it on) and so I require a LOT of practice and instruction. So glad I live in the same house as the teacher! She is an awesome, dedicated, leader, and she is so beautiful to watch ... full of emotion. Sometimes it's just me & her signing and the praise team & band singing/playing, but interest is growing and this next time (8/3) there will be 5 of us signing, including her sister! Bethany has agreed to take on a very small part, the introduction to the song, before stepping away and taking her usual place on the drums (where, I might add, she also displays exceptional talent!). We will be signing to "The Well" by Casting Crowns. If you're not familiar with that song, well, look it up. It has amazing lyrics and hopefully we will be able to do those lyrics justice and bring them even more to life, help the words reach people's hearts, with sign. Exciting!
I always seem to have a really low point in my attitude after receiving bad scan news. This is normal! But thankfully, through prayer and the help (and sometimes merely the presence) of family, I eventually find my way to hopefulness or at the least, peace.
"Come to me, all who are weary and burdened, and I will give you rest." Matthew 11:28.
P.S. Yes, I've enlarged the font. Guess my eyes are getting old.
Sunday, July 13, 2014
Side Effects of Chemo Outweighing Benefits?
Hello all! It's been an eventful two months on the cancer front. I'm so thankful that (1) Danny is no longer working at the accounting firm, and (2) It is Summer so our family's schedule is dialed back quite a bit from its usual craziness. More on both of these later on.
After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy. It started out as numbness in the hands and feet. But then it began progressing, and quickly! The numbness started creeping up my legs and up my arms. Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge. And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object. I reported the symptoms, and my concern, to Dr. P and the nurses. The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses. (I, too, learned this in nursing school. I guess that was the extent of our neuropathy evaluation lesson!) No, no trouble there. I could still button my clothes. But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.
Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day. She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose. Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it. With the new plan, the problem arose when I was unable to get past twice a day. It made me so tired and groggy! I simply couldn't imagine adding another dose. Additionally, it didn't appear to be working at all on the neuropathy symptoms. Then again I had yet to get up to the recommended therapeutic dose, so who could really say? Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy. She also prescribed a different drug: Lyrica, three times a day. This, too, didn't seem to help. In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin. Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.
Let me clarify what I meant by the symptoms being "much, much worse." This is basically where I am now. I have numbness and tingling in the hands/arms and feet/legs. I also have weakness. I have difficulty walking distances such as from the parking lot to the grocery store. I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things. I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you. I can't put on earrings or operate necklaces. I have a lot of trouble picking up pills and also Q-tips. My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers. Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain. And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts. I can finally answer "yes" to the most popular question! :) At least I still have a sense of humor! (sometimes)
Last weekend, I finally reached my breaking point. I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion. They weren't landing where I wanted them to! I'm normally very good at this (one of my many trivial, unimportant talents!) Then, I couldn't hold on to my fork while eating the pancakes! It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them. I CRIED! I know, I know, it seems such a trivial thing to cry over. I was scheduled to start my next cycle of Eribulin on Monday. And at that moment, I decided that I couldn't do it. I actually sobbed through these words to Danny: "I couldn't flip the pancaaaaaakes!" LOL! But I couldn't bear the thought of allowing them to infuse more poison into my veins. See, Eribulin is a known neurotoxic agent. And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.
I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion. She advised me to keep my neurology consult appointment and my appointment with her for the following Monday. Here's where it gets complicated...
My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.) They are calling it "mixed results." The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease." The CT of the abdomen & pelvis showed "no progression of hepatic disease." The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."
Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer. Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin. I suppose this is why it was such an emotional time for me. My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it! But here's the thing: I contend that the chemo is not actually working. That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs. The plot thickens!! My tumor markers continue to plummet downward, well into the "normal" range. Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges. Additionally her bowels have never been the same ... but I digress!)
Sooooo, clearly I need to have some discussion with my doctor! Appointment coming soon.
Thanks for hanging in there with me. I appreciate your prayers and support. Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.
After my last "so far, so good" post, I began experiencing symptoms of peripheral neuropathy. It started out as numbness in the hands and feet. But then it began progressing, and quickly! The numbness started creeping up my legs and up my arms. Oddly, I noticed that my slip-on slippers were coming off around the house, without my knowledge. And I was beginning to drop things if I wasn't paying close attention to the act of holding onto the object. I reported the symptoms, and my concern, to Dr. P and the nurses. The standard medical professional question regarding neuropathy, "Are you having difficulty buttoning your shirts?" was asked by a few different nurses. (I, too, learned this in nursing school. I guess that was the extent of our neuropathy evaluation lesson!) No, no trouble there. I could still button my clothes. But otherwise, the seemingly quick progression of symptoms was quite disconcerting and worrisome to me.
Dr. P recommended that I take Neurontin, starting just at bedtime then gradually increasing until the dose reached three times a day. She said that Neurontin 100mg at bedtime that Dr. Coscio had prescribed months earlier for what I now know was barely perceptible neuropathy symptoms was nowhere near a therapeutic dose. Expectedly, that dose didn't seem to help at all back then, so I had stopped taking it. With the new plan, the problem arose when I was unable to get past twice a day. It made me so tired and groggy! I simply couldn't imagine adding another dose. Additionally, it didn't appear to be working at all on the neuropathy symptoms. Then again I had yet to get up to the recommended therapeutic dose, so who could really say? Since I was distressed and as she considered the side effects, Dr. P recommended that I be seen by an MDA neurologist, since they see lots of patients who have chemotherapy-induced peripheral neuropathy. She also prescribed a different drug: Lyrica, three times a day. This, too, didn't seem to help. In fact, the symptoms were much, much worse, even though I tolerated the Lyrica much better than the Neurontin. Taking it three times a day, I was a little tired but seemed to have a clearer head than when on Neurontin.
Let me clarify what I meant by the symptoms being "much, much worse." This is basically where I am now. I have numbness and tingling in the hands/arms and feet/legs. I also have weakness. I have difficulty walking distances such as from the parking lot to the grocery store. I'm having trouble starting my car, brushing my teeth, wiping myself(!), turning magazine pages, and holding onto things. I can't do or open anything that requires finger strength and/or coordination -- this is probably one of those things that you can't imagine or comprehend the breadth of until it's happening to you. I can't put on earrings or operate necklaces. I have a lot of trouble picking up pills and also Q-tips. My keyboarding has slowed to a crawl and my accuracy sucks since I can't feel or coordinate my fingers. Weirdly, sometimes my middle finger gets bent up under things, such as a shopping cart handle or steering wheel, and I don't even realize it until I see it or it causes pain. And alas, I have a LOT of difficulty (and sometimes find it impossible and require assistance) buttoning my tops and pants/shorts. I can finally answer "yes" to the most popular question! :) At least I still have a sense of humor! (sometimes)
Last weekend, I finally reached my breaking point. I was making pancakes Saturday morning, and I was unable to flip the pancakes in a coordinated fashion. They weren't landing where I wanted them to! I'm normally very good at this (one of my many trivial, unimportant talents!) Then, I couldn't hold on to my fork while eating the pancakes! It fell from my hands once, then I held it, but it was more like it was just resting on my fingers as opposed to being held by them. I CRIED! I know, I know, it seems such a trivial thing to cry over. I was scheduled to start my next cycle of Eribulin on Monday. And at that moment, I decided that I couldn't do it. I actually sobbed through these words to Danny: "I couldn't flip the pancaaaaaakes!" LOL! But I couldn't bear the thought of allowing them to infuse more poison into my veins. See, Eribulin is a known neurotoxic agent. And since my serious symptoms began shortly after starting it, clearly it's the most likely cause.
I notified Dr. P via MDA Secure Messaging that I no longer wished to be on Eribulin, and I cancelled Monday's infusion. She advised me to keep my neurology consult appointment and my appointment with her for the following Monday. Here's where it gets complicated...
My every-3-month scans were done at the end of June (it's actually been 4 months because all was delayed due to radiation.) They are calling it "mixed results." The CT scan of the chest showed "significant enlargement of pleural metastases in the left hemithorax and enlargement of the left pleural effusion in keeping with progressive disease." The CT of the abdomen & pelvis showed "no progression of hepatic disease." The MRIs of the spine showed "widespread osseous metastases of thoracic spine, lumbar spine, and sacro iliac joints with no significant interval change detected ... no disease progression ... positive response to therapy within the lumbar spine."
Dr. P recommended that I stay on Eribulin since it appears to be working on at least some of my cancer. Sorry but I am somewhat out of order here ... the scan results and this recommendation came before my meltdown and cancellation of my next cycle of Eribulin. I suppose this is why it was such an emotional time for me. My doctor is telling me that the chemo I'm on is somewhat working, yet I am making an executive decision to stop it! But here's the thing: I contend that the chemo is not actually working. That's right, Dr. Kim thinks that the improvement shown in the bones is instead a result of the radiation to the spine and sacro-iliacs. The plot thickens!! My tumor markers continue to plummet downward, well into the "normal" range. Dr. Kim can only speculate that this, too, is the result of large doses of radiation therapy to the back (so large, in fact, that she endured MUCH suffering from their side effects in the weeks following RT, and to this day she has a large patch of soft tissue edema on her back that regularly gets displaced into alien-like bulges. Additionally her bowels have never been the same ... but I digress!)
Sooooo, clearly I need to have some discussion with my doctor! Appointment coming soon.
Thanks for hanging in there with me. I appreciate your prayers and support. Thought I was coming out of this "rough patch," but I seem to have slipped right into another one.
Friday, April 11, 2014
So far, so good on new chemo! And other stuff...
Two Fridays ago I started on Eribulin, and SO FAR, SO GOOD! I was a little tired over the first weekend, but since I had not yet regained all my strength from the pits of radiation, it's hard to tell if that was from the chemo or not. Sunday and Monday I had a low-grade fever of 99.5-100.4, but that passed without further incident. Last Friday I received my 2nd dose of Eribulin. Almost didn't, because blood counts were really low, nearly at the threshold of being too low to get next chemo dose. Eribulin seems to be much worse on the WBC's than Abraxane was, so I better be careful around crowds and sick people. No more fever though.
Meanwhile, overall I am feeling MUCH, MUCH better than I have been. Yaaaaaaaayyyyyyy! Praise God!!! I feel like my brain is actually functioning now and I'm able to think, for the most part, without being so confused and stressed out about everything. I've done some more reading on steroids, in particular Decadron which I was on, and man oh man ... seriously ... I never, ever want to be on that again. I don't like to read about side effects before I start on a new drug. Well I do it, but just a glance, so I have an idea. Don't want to study them or try to commit them to memory because that would predispose me to having more side effects. At least I think it would. Reading now and realizing that many, no, most of what I was feeling and the way I was acting was from the Decadron! (Except for the diarrhea and tiredness, which was from the radiation to the bowel area)
One SE I read about was a craving for carbohydrates and sweets! Yessss! I thought it was crazy at the time, but I actually said these words to Danny: "I really feel like eating some potatoes. I wish we had some potatoes, but we don't." I was really sad that I couldn't eat potatoes right then and there! The next day, I got some potatoes and had him cook me potatoes & eggs (one of my favorite foods, but for some reason I'm no good at cooking it, so I never get to have it.) For the next few days, I ate baked potato for lunch. And the sweets! I admit to having LOTS of sweets during that bleak, dark, weak, horrible time. Ohmygosh. I find it fascinating (and a little scary) that a drug can affect so many of your systems, including your personality and food cravings & appetite. Makes we rethink, or at least wonder about, the whole mental illness issue.
Today was me & Danny's 22nd anniversary! He was able to leave work early and we went out to lunch, something we haven't done in quite some time. Steaks at Saltgrass! Yum! It was so good, and it was a MUCH NEEDED outing for just the two of us. I went hatless, since I still seem to be growing some hair which started late last year (when I was still on Abraxane!) My hair is fairly thin, and the hairline is pretty far back (me and Danny match, which is darn funny!) but it's been styling itself into a cute little mohawk and I'm just going with it. I asked Danny at lunch today, "Why do I still not have any eyebrows??" Even though my hair is growing back slowly, I still have no eyebrows. Missing eyebrows looks really odd! It would make such a difference if I just had some eyebrows. And more eyelashes! I have very few eyelashes. I excitedly told Danny that I keep tugging on my hair and it seems to be holding on. I may be in that 50% of people who don't lose their hair on Eribulin. Woohoo!
I kid you not ... a mere 3 hours later, my head was feeling a little itchy. A little tug on my mini-mohawk yielded 5-6 hairs between my two fingers, and again, and again, and ... yes, my bubble was burst. Looks like I'm in the OTHER 50% of Eribulin patients who DO lose their hair. Oh well, there are worse things than being bald.
Since I am feeling better overall, we decided to boil some crawfish over the weekend. Being able to peel my own crawfish, as previously mentioned, was awesome! When you can't peel your own, you can't really eat to satiation. Well this time, I peeled my own and I peeled til I was good & full of crawfish! Heaven. It's so good to be able to eat good food again. After the boil comes the leftovers, and I've created some recipes that utilize the leftovers so tastily that we actually plan for it by adding more extras to the boil than we normally would, just so we can make the recipes. Lol. Sausage, potatoes, and corn, oh my! We made my Spoils of the Boil Soup, and this time we had extra leftover potatoes so I also made Cajun Potato Soup (a recipe which I just invented, so very proud of myself.) So good! Love the spice!! And there's still more sausage and corn in the freezer that we will use later for jambalaya, red beans, corn & crab bisque, and just corn as a side with anything else. One thing about having your income go down, you do learn to adjust and cut corners where you can, although I've always enjoyed cooking, trying and creating new recipes, and meal-planning. My thing is, I hate to have food go to waste. I am a little crazy nutty about using up leftovers and trying to cook what we have in the house. Also only buying meat that's on sale. I meal-plan around all of that. I'm not so good at using coupons -- I've tried, but I fail, sorry... but I do have plenty of other thrifty qualities, I swear! Anyhoo... it is good to be back to my providing-meals-for-my-family self. :)
The only other issue going on right now is that for a little over a week, I have what started looking like a 6-7-inch circular rash on my lower back. It was itchy, and scratching it made it feel raw and unpleasant. Actually I didn't SEE it until after I felt the itchiness and scratched it, then looked in the mirror. Who knows how long the redness was there, but I didn't look at my back until I felt the symptoms. I presumed it was a radiation burn, like a sunburn, from the radiation to the lower spine, so I contacted the radiation nurse about it and sent her a picture (Ever tried to take a lower back selfie? Yea, me neither ... it's really not easy. You probably should have someone help you.) She said it would be unusual to have a skin reaction to this radiation. Of. Course. Kim will always get the weird side effects and symptoms, right?! Nurse also said that it was odd that I was over 2 weeks past my radiation completion date. A skin reaction usually doesn't take that long to show up. Of. Course. She recommended I use Aquaphor ointment and Cortisone cream, keeping the area moist. Here it is, 8 days later, and it is no better. In fact I think it's a little worse. A deeper red and the area seems to be enlarging a bit. Will plan to stop in at the radiation department on Wednesday, the day I see Dr. Coscio again and also start my 2nd cycle of Eribulin (blood counts willing-- just finished my "off week," so I should be good to go with that.) A medical professional needs to see this, I suppose.
Well, thanks for reading, y'all! And for the prayers-- they have really helped!
Meanwhile, overall I am feeling MUCH, MUCH better than I have been. Yaaaaaaaayyyyyyy! Praise God!!! I feel like my brain is actually functioning now and I'm able to think, for the most part, without being so confused and stressed out about everything. I've done some more reading on steroids, in particular Decadron which I was on, and man oh man ... seriously ... I never, ever want to be on that again. I don't like to read about side effects before I start on a new drug. Well I do it, but just a glance, so I have an idea. Don't want to study them or try to commit them to memory because that would predispose me to having more side effects. At least I think it would. Reading now and realizing that many, no, most of what I was feeling and the way I was acting was from the Decadron! (Except for the diarrhea and tiredness, which was from the radiation to the bowel area)
One SE I read about was a craving for carbohydrates and sweets! Yessss! I thought it was crazy at the time, but I actually said these words to Danny: "I really feel like eating some potatoes. I wish we had some potatoes, but we don't." I was really sad that I couldn't eat potatoes right then and there! The next day, I got some potatoes and had him cook me potatoes & eggs (one of my favorite foods, but for some reason I'm no good at cooking it, so I never get to have it.) For the next few days, I ate baked potato for lunch. And the sweets! I admit to having LOTS of sweets during that bleak, dark, weak, horrible time. Ohmygosh. I find it fascinating (and a little scary) that a drug can affect so many of your systems, including your personality and food cravings & appetite. Makes we rethink, or at least wonder about, the whole mental illness issue.
Today was me & Danny's 22nd anniversary! He was able to leave work early and we went out to lunch, something we haven't done in quite some time. Steaks at Saltgrass! Yum! It was so good, and it was a MUCH NEEDED outing for just the two of us. I went hatless, since I still seem to be growing some hair which started late last year (when I was still on Abraxane!) My hair is fairly thin, and the hairline is pretty far back (me and Danny match, which is darn funny!) but it's been styling itself into a cute little mohawk and I'm just going with it. I asked Danny at lunch today, "Why do I still not have any eyebrows??" Even though my hair is growing back slowly, I still have no eyebrows. Missing eyebrows looks really odd! It would make such a difference if I just had some eyebrows. And more eyelashes! I have very few eyelashes. I excitedly told Danny that I keep tugging on my hair and it seems to be holding on. I may be in that 50% of people who don't lose their hair on Eribulin. Woohoo!
I kid you not ... a mere 3 hours later, my head was feeling a little itchy. A little tug on my mini-mohawk yielded 5-6 hairs between my two fingers, and again, and again, and ... yes, my bubble was burst. Looks like I'm in the OTHER 50% of Eribulin patients who DO lose their hair. Oh well, there are worse things than being bald.
Since I am feeling better overall, we decided to boil some crawfish over the weekend. Being able to peel my own crawfish, as previously mentioned, was awesome! When you can't peel your own, you can't really eat to satiation. Well this time, I peeled my own and I peeled til I was good & full of crawfish! Heaven. It's so good to be able to eat good food again. After the boil comes the leftovers, and I've created some recipes that utilize the leftovers so tastily that we actually plan for it by adding more extras to the boil than we normally would, just so we can make the recipes. Lol. Sausage, potatoes, and corn, oh my! We made my Spoils of the Boil Soup, and this time we had extra leftover potatoes so I also made Cajun Potato Soup (a recipe which I just invented, so very proud of myself.) So good! Love the spice!! And there's still more sausage and corn in the freezer that we will use later for jambalaya, red beans, corn & crab bisque, and just corn as a side with anything else. One thing about having your income go down, you do learn to adjust and cut corners where you can, although I've always enjoyed cooking, trying and creating new recipes, and meal-planning. My thing is, I hate to have food go to waste. I am a little crazy nutty about using up leftovers and trying to cook what we have in the house. Also only buying meat that's on sale. I meal-plan around all of that. I'm not so good at using coupons -- I've tried, but I fail, sorry... but I do have plenty of other thrifty qualities, I swear! Anyhoo... it is good to be back to my providing-meals-for-my-family self. :)
The only other issue going on right now is that for a little over a week, I have what started looking like a 6-7-inch circular rash on my lower back. It was itchy, and scratching it made it feel raw and unpleasant. Actually I didn't SEE it until after I felt the itchiness and scratched it, then looked in the mirror. Who knows how long the redness was there, but I didn't look at my back until I felt the symptoms. I presumed it was a radiation burn, like a sunburn, from the radiation to the lower spine, so I contacted the radiation nurse about it and sent her a picture (Ever tried to take a lower back selfie? Yea, me neither ... it's really not easy. You probably should have someone help you.) She said it would be unusual to have a skin reaction to this radiation. Of. Course. Kim will always get the weird side effects and symptoms, right?! Nurse also said that it was odd that I was over 2 weeks past my radiation completion date. A skin reaction usually doesn't take that long to show up. Of. Course. She recommended I use Aquaphor ointment and Cortisone cream, keeping the area moist. Here it is, 8 days later, and it is no better. In fact I think it's a little worse. A deeper red and the area seems to be enlarging a bit. Will plan to stop in at the radiation department on Wednesday, the day I see Dr. Coscio again and also start my 2nd cycle of Eribulin (blood counts willing-- just finished my "off week," so I should be good to go with that.) A medical professional needs to see this, I suppose.
Well, thanks for reading, y'all! And for the prayers-- they have really helped!
Thursday, March 27, 2014
Update
My next treatment step was going to be a clinical trial. I read over the literature and immediately felt overwhelmed by the trial's crazy scheduling requirements. But after discussing with my family, decided to pursue it, thinking it was an opportunity that I didn't want to pass me by. Well, at this week's visit with the research nurse and Dr. Moulder, I completely reversed my decision and am NOT doing the clinical trial. Here's why. It was explained to me that it's a Phase I trial, meaning this will be the first time the drug is being tested ON HUMANS. That fact really gave me pause. The nurse said "They are not looking for response, nor expecting any. What they are looking at is what side effects does it cause, and what will the dosages be." Wow. Alrighty then. A real-life human guinea pig. Mmhm. And then there was the fact that it could take 2-4 weeks before the testing on my tumor tissue could take place which would determine if I even QUALIFY for this study. THAT was the real kicker.
Excuse me, but, I am already over a month out of my last chemotherapy drug which STOPPED WORKING! My last scans were bad. I need to be in treatment like, yesterday. I understand that I couldn't have begun any sort of chemotherapy while on radiation. That's not allowed. And I concede that last week, I felt like I was dying, so that wouldn't have been a good time either! But now that I'm feeling like I might actually live through these radiation side effects, I am ready to move on and start kicking cancer's butt again. I don't want to give the cancer more time to gain the upper hand. Gotta get a grip, keep it in check, kill the beast!
Over the weekend, I was able to stop taking Imodium daily. Not to say that my bowels are back to normal. They are not. But they did improve to a level where I felt I didn't need to take Imodium. I started being able to eat more than liquids and soft, easy-to-digest carbs. In retrospect I probably advanced my diet a little too quickly. (A girl gets hungry for real food after so long on the diarrhea diet!) Yes, I am sure I did, because just yesterday, well ... let's just say I had some "regression" in my gastrointestinal improvement.
Overall, I am doing much better both physically and mentally. I still feel an increased level of stress, but that is to be expected with what's going on. I am having to take on much more both at The Pink Ribbon Shop and at home and with the kids' activities since Danny is working full time at an accounting firm. Except that I am NOT able to do these extra things or even what I used to do, because I've been sick. It's really been difficult. Danny has been going in to PRS in the evenings and weekends to get the office work done. And thankfully we have Lisa who fulfills our orders -- our bread and butter, so to speak.
We pray a lot, and we try to live our lives in a way that follows God's will for us. We wonder if we have made the right decision in having Danny get a full time job. Of course there is never a good time for your business to take a nosedive, but all at the same time as my cancer worsening? Really God? Oookayyy, if that's what you want, we'll do it. He was able to get a job so quickly, we couldn't help but think it was what God wanted. For whatever reason, or reasons we may never know or fully understand, we have to believe that since we prayed so much about it, and it came so easy, that it was meant to be. Also, we are moved into our new office and it's nearly complete. It's such a pretty, peaceful, country place! But sadly, Danny doesn't get to enjoy it all day, or hardly at all. God's timing. Only He knows. Who are we to question? Trust me, we DO question ... A LOT! We are only human, so at least God knows of our weaknesses and inabilities. Still ... these past weeks have been very trying on us, our family, our kids, our marriage. Prayers still needed on all fronts!
My sister-in-law, Lisa, accompanied me to my Dr. Moulder visit regarding the clinical trial. I'm so glad I was feeling a little better, and so was able to be much better company than I would have been the week prior, or even just a few days before. We talked and laughed a lot, which I needed. Been stuck in the house for too long -- not good for me. Lisa brought a notepad, and even already had some questions jotted down for the doctor. So sweet! And responsible! So glad we are family. She and I were definitely in agreement that the timeline of the clinical trial was not the best thing for me, at this time, considering the state of my progressing cancer. It was a huge relief to me that it seemed totally like the right decision! I was sure. I had no misgivings about it, and I knew that was God's doing. Honestly I wasn't too keen on the clinical trial thing. This particular one, not just clinical trials in general. Even after Dr. Moulder came in and explained that of course we look for response and hope for response. Duh! The whole point of clinical trials is to try out new drugs and hope they work! But this is not the clinical trial for me, right now. However she did mention another one that may have potential for me in the future, and she is adding me to the waiting list.
Tomorrow, Friday, I will start on a chemotherapy drug called Eribulin (aka Havalen.) This, they say, is similar in class to Abraxane which I tolerated fairly well for over a year. And it has similar mild side effects. It's a 15-minute weekly infusion that's given 2 weeks on, 1 week off. At my chemotherapy "home," the MD Anderson Woodlands Campus. Actually looking forward to moving on! Hopefully this one will work. Quickly, for a long time, and without debilitating side effects!
Excuse me, but, I am already over a month out of my last chemotherapy drug which STOPPED WORKING! My last scans were bad. I need to be in treatment like, yesterday. I understand that I couldn't have begun any sort of chemotherapy while on radiation. That's not allowed. And I concede that last week, I felt like I was dying, so that wouldn't have been a good time either! But now that I'm feeling like I might actually live through these radiation side effects, I am ready to move on and start kicking cancer's butt again. I don't want to give the cancer more time to gain the upper hand. Gotta get a grip, keep it in check, kill the beast!
Over the weekend, I was able to stop taking Imodium daily. Not to say that my bowels are back to normal. They are not. But they did improve to a level where I felt I didn't need to take Imodium. I started being able to eat more than liquids and soft, easy-to-digest carbs. In retrospect I probably advanced my diet a little too quickly. (A girl gets hungry for real food after so long on the diarrhea diet!) Yes, I am sure I did, because just yesterday, well ... let's just say I had some "regression" in my gastrointestinal improvement.
Overall, I am doing much better both physically and mentally. I still feel an increased level of stress, but that is to be expected with what's going on. I am having to take on much more both at The Pink Ribbon Shop and at home and with the kids' activities since Danny is working full time at an accounting firm. Except that I am NOT able to do these extra things or even what I used to do, because I've been sick. It's really been difficult. Danny has been going in to PRS in the evenings and weekends to get the office work done. And thankfully we have Lisa who fulfills our orders -- our bread and butter, so to speak.
We pray a lot, and we try to live our lives in a way that follows God's will for us. We wonder if we have made the right decision in having Danny get a full time job. Of course there is never a good time for your business to take a nosedive, but all at the same time as my cancer worsening? Really God? Oookayyy, if that's what you want, we'll do it. He was able to get a job so quickly, we couldn't help but think it was what God wanted. For whatever reason, or reasons we may never know or fully understand, we have to believe that since we prayed so much about it, and it came so easy, that it was meant to be. Also, we are moved into our new office and it's nearly complete. It's such a pretty, peaceful, country place! But sadly, Danny doesn't get to enjoy it all day, or hardly at all. God's timing. Only He knows. Who are we to question? Trust me, we DO question ... A LOT! We are only human, so at least God knows of our weaknesses and inabilities. Still ... these past weeks have been very trying on us, our family, our kids, our marriage. Prayers still needed on all fronts!
My sister-in-law, Lisa, accompanied me to my Dr. Moulder visit regarding the clinical trial. I'm so glad I was feeling a little better, and so was able to be much better company than I would have been the week prior, or even just a few days before. We talked and laughed a lot, which I needed. Been stuck in the house for too long -- not good for me. Lisa brought a notepad, and even already had some questions jotted down for the doctor. So sweet! And responsible! So glad we are family. She and I were definitely in agreement that the timeline of the clinical trial was not the best thing for me, at this time, considering the state of my progressing cancer. It was a huge relief to me that it seemed totally like the right decision! I was sure. I had no misgivings about it, and I knew that was God's doing. Honestly I wasn't too keen on the clinical trial thing. This particular one, not just clinical trials in general. Even after Dr. Moulder came in and explained that of course we look for response and hope for response. Duh! The whole point of clinical trials is to try out new drugs and hope they work! But this is not the clinical trial for me, right now. However she did mention another one that may have potential for me in the future, and she is adding me to the waiting list.
Tomorrow, Friday, I will start on a chemotherapy drug called Eribulin (aka Havalen.) This, they say, is similar in class to Abraxane which I tolerated fairly well for over a year. And it has similar mild side effects. It's a 15-minute weekly infusion that's given 2 weeks on, 1 week off. At my chemotherapy "home," the MD Anderson Woodlands Campus. Actually looking forward to moving on! Hopefully this one will work. Quickly, for a long time, and without debilitating side effects!
Friday, March 21, 2014
Radiation is kicking my butt!
So, I saw Dr. Coscio Monday to report that I am not doing well! I'm suffering from extreme fatigue and diarrhea. This is the worse I've felt while on cancer treatments of any kind in the past 14 years. No energy. I can't eat anything without heading to the toilet shortly afterward. But I'm so hungry! Sometime I really punish myself by eating real food ... then I PAY in the bathroom for the next several hours. Imodium is my friend, and helps the diarrhea, but the abdominal discomfort, bloating, and crampiness remains. As long as I keep to a liquid diet, jello, etc., I avoid diarrhea, but I know that I need to keep hydrated and I need to eat to keep going! I feel like my body is deteriorating before my very eyes. I've lost weight. And muscle. Yes, I look like a weakened cancer patient. For years, I've had the luxury of being a cancer patient, yet appearing to be relatively healthy (except for the bald head.)
Although the steroid fog is improved, I am still not myself. I don't seem to be able to control my emotions. Everyone and everything seems to aggravate me, and I've not been nice. This doesn't help the family to want to help me. I wonder if I'll ever get better! Will I ever have a clear head again?!
I was told by the radiation doctors that I "may experience some diarrhea." But I did not expect it to be this bad. Perhaps, in my mind, I thought it wouldn't be that bad, so I didn't take the warning seriously. There was nothing I could have done differently anyway. The whole 2 weeks I was receiving radiation treatments, I only had a slight "change" in my bowel habits. The 2nd week, I did feel very tired. It surprised me, because the first time I had radiation (14 years ago, to the chest) it was oh so easy. I had no side effects whatsoever. I attributed that to the fact that I had just completed a pretty rough course of chemotherapy, and so the radiation was easy. Guess I expected to breeze through this time also.
Dr. Coscio explained that everything I'm experiencing now is from the radiation to the spine and iliacs. And the steroids (the mental craziness, and thrush.) She showed me my "radiation field," which was interesting! It was a x-ray CT scan-like view on the computer screen of the area of my body that was radiated. The structures were outlined in a color-coded fashion, and the color key indicated how much radiation each area received. She pointed out that it was a very large area that included quite a large portion of bowel. My bowels have been damaged! She said this could last for 2 weeks after the completion of radiation. She explained that there is quite a big difference between radiation to the spine (and hence bowels) and radiation to the chest which is much more superficial.
Right now, I am at the end of the first post-radiation week. I can't believe the diarrhea is lasting this long, and so severely. Wow.
Next week, I have an appointment with Dr. Moulder, downtown, to discuss the next step in my treatment plan, a clinical trial.
Although the steroid fog is improved, I am still not myself. I don't seem to be able to control my emotions. Everyone and everything seems to aggravate me, and I've not been nice. This doesn't help the family to want to help me. I wonder if I'll ever get better! Will I ever have a clear head again?!
I was told by the radiation doctors that I "may experience some diarrhea." But I did not expect it to be this bad. Perhaps, in my mind, I thought it wouldn't be that bad, so I didn't take the warning seriously. There was nothing I could have done differently anyway. The whole 2 weeks I was receiving radiation treatments, I only had a slight "change" in my bowel habits. The 2nd week, I did feel very tired. It surprised me, because the first time I had radiation (14 years ago, to the chest) it was oh so easy. I had no side effects whatsoever. I attributed that to the fact that I had just completed a pretty rough course of chemotherapy, and so the radiation was easy. Guess I expected to breeze through this time also.
Dr. Coscio explained that everything I'm experiencing now is from the radiation to the spine and iliacs. And the steroids (the mental craziness, and thrush.) She showed me my "radiation field," which was interesting! It was a x-ray CT scan-like view on the computer screen of the area of my body that was radiated. The structures were outlined in a color-coded fashion, and the color key indicated how much radiation each area received. She pointed out that it was a very large area that included quite a large portion of bowel. My bowels have been damaged! She said this could last for 2 weeks after the completion of radiation. She explained that there is quite a big difference between radiation to the spine (and hence bowels) and radiation to the chest which is much more superficial.
Right now, I am at the end of the first post-radiation week. I can't believe the diarrhea is lasting this long, and so severely. Wow.
Next week, I have an appointment with Dr. Moulder, downtown, to discuss the next step in my treatment plan, a clinical trial.
Thursday, March 13, 2014
Really struggling...battling feelings of hopelessness & despair. Not getting along with anyone, not feeling well. Run down, tired, worn out, angry. Almost exclusively reading scripture and inspirational stuff, yet still feeling so so low. And totally useless and purposeless, and God, why am I still here on this earth?? Everyone is miserable around me. I'm miserable to me! I can't even think straight. My mind can't seem to focus or figure anything out. I have no control over my thoughts or words or feelings. Yet everyone holds me accountable for everything. I am still responsible for myself, even though I don't have the mental capacity to be. Don't you see, I'm no longer the right person for this job. These wife /mom /business owner positions. Lord help me get through this very dark stage in life
Wednesday, March 12, 2014
Trying to remain positive
Well I think the combination of steroids and sleeping aids are making me crazy! At least I hope that's what it is, because if not, I'm definitely heading for the loony bin. Just been feeling doomed and hopeless. Aggravated at everyone and everything. Why won't people leave me alone, and why aren't they calling, don't they care? All at the same time! I'm also feeling quite fatigued ... I guess due to the radiation? And probably exacerbated by the lack of good solid sleep. Every activity seems to take an awful lot out of me. I'm trying to be happy with the littlest of accomplishments, as far as stuff around the house and running errands and such. Feeling like I'm unable to handle my own life right now.
So with much purpose, I will leave out my whining and complaining, and I will outline some of the blessings I've received this past week...
My worries about how in the world I was going to handle a new treatment regimen in the coming weeks, alone, since Danny now has a job outside the Pink Ribbon Shop (more on that later ... remember, I am concentrating on the positives this post) has been addressed by my wonderful sister-in-law, Lisa. Danny's brother Dwayne is in the Coast Guard, and is stationed in Slidell, LA. As God would have it, Dwayne has been assigned to a temporary position here in the Houston area, about 1 1/2 hours from us. Lisa is able to stay with him in the hotel, and has offered to accompany me to my clinic visits, at least while Dwayne is still here in TX, since Danny will have to be working. This has taken a tremendous load off my shoulders! It is the unknown that is the hardest part. After I complete radiation at this week's end, I will be starting on one of 2 treatments: either a clinical trial or a new chemotherapy drug. After much deliberation and discussion (thanks also to Lisa for providing some clarity on the decision-making, as well) I've decided to pursue the clinical trial (again, more on that later.) The clinical trial that Dr. Coscio has in mind for me will require me to go to the downtown main campus of MDA -- a more inconvenient and longer drive than my weekly chemo's to the MDA Woodland's location. I wasn't keen on going alone because firstly, it's going to be a totally new treatment to me and I don't know what side effects to expect. Secondly, I don't trust my current state of mind, or my chemobrain, to "get" everything I'm supposed to. Just looking at the schedule alone of the testing, med administration, etc of the clinical trial made my eyes glaze over and overwhelmed me, which is why I initially said "no, I can't do this." But with Lisa able to go with me, I feel much better about it! God's timing is definitely at work here, and for that I am thankful.
Last weekend, my other brother-in-law, Darryl, celebrated his 50th birthday with a family/friends crawfish boil. I love boiled crawfish! Our family usually gets together a few times a year during crawfish season, and it's always a good time. For the past couple of seasons, I've been unable to peel my own crawfish, due to the fingernail issues caused by Abraxane. Although I love the taste of crawfish, it is disheartening to have to have someone else peel your food for you, like a child! Well this time, since my fingers have healed up, I peeled my own crawfish! Woot! So I was able to have the whole crawfish boil "experience"! Ahh, the little victories, right?
Last week, a band mom friend of ours provided a gift card to one of our local pizza places. Our family took advantage of that, pronto! We love pizza. It was nice to get out and not have to worry about cooking or cleaning. And this week, Bethany's friend Tyler's mom provided us with a home-cooked meal of pot roast complete with vegetables and gravy! That fed our family for 2 dinners and there's more leftover for at least an extra lunch or two. These little gestures really mean a lot to us, and so practical too! I continue to receive offers of help from others, too, and it may be time, soon, for me to learn to be more accepting of the help. And be more specific as to how they can help.
It is times like these, when I am personally at my lowest, that I feel like God is truly the only thing holding me up and keeping me going. I am glad that at least today, I can see His hands reflected in the people who are present in our lives.
So with much purpose, I will leave out my whining and complaining, and I will outline some of the blessings I've received this past week...
My worries about how in the world I was going to handle a new treatment regimen in the coming weeks, alone, since Danny now has a job outside the Pink Ribbon Shop (more on that later ... remember, I am concentrating on the positives this post) has been addressed by my wonderful sister-in-law, Lisa. Danny's brother Dwayne is in the Coast Guard, and is stationed in Slidell, LA. As God would have it, Dwayne has been assigned to a temporary position here in the Houston area, about 1 1/2 hours from us. Lisa is able to stay with him in the hotel, and has offered to accompany me to my clinic visits, at least while Dwayne is still here in TX, since Danny will have to be working. This has taken a tremendous load off my shoulders! It is the unknown that is the hardest part. After I complete radiation at this week's end, I will be starting on one of 2 treatments: either a clinical trial or a new chemotherapy drug. After much deliberation and discussion (thanks also to Lisa for providing some clarity on the decision-making, as well) I've decided to pursue the clinical trial (again, more on that later.) The clinical trial that Dr. Coscio has in mind for me will require me to go to the downtown main campus of MDA -- a more inconvenient and longer drive than my weekly chemo's to the MDA Woodland's location. I wasn't keen on going alone because firstly, it's going to be a totally new treatment to me and I don't know what side effects to expect. Secondly, I don't trust my current state of mind, or my chemobrain, to "get" everything I'm supposed to. Just looking at the schedule alone of the testing, med administration, etc of the clinical trial made my eyes glaze over and overwhelmed me, which is why I initially said "no, I can't do this." But with Lisa able to go with me, I feel much better about it! God's timing is definitely at work here, and for that I am thankful.
Last weekend, my other brother-in-law, Darryl, celebrated his 50th birthday with a family/friends crawfish boil. I love boiled crawfish! Our family usually gets together a few times a year during crawfish season, and it's always a good time. For the past couple of seasons, I've been unable to peel my own crawfish, due to the fingernail issues caused by Abraxane. Although I love the taste of crawfish, it is disheartening to have to have someone else peel your food for you, like a child! Well this time, since my fingers have healed up, I peeled my own crawfish! Woot! So I was able to have the whole crawfish boil "experience"! Ahh, the little victories, right?
Last week, a band mom friend of ours provided a gift card to one of our local pizza places. Our family took advantage of that, pronto! We love pizza. It was nice to get out and not have to worry about cooking or cleaning. And this week, Bethany's friend Tyler's mom provided us with a home-cooked meal of pot roast complete with vegetables and gravy! That fed our family for 2 dinners and there's more leftover for at least an extra lunch or two. These little gestures really mean a lot to us, and so practical too! I continue to receive offers of help from others, too, and it may be time, soon, for me to learn to be more accepting of the help. And be more specific as to how they can help.
It is times like these, when I am personally at my lowest, that I feel like God is truly the only thing holding me up and keeping me going. I am glad that at least today, I can see His hands reflected in the people who are present in our lives.
Tuesday, March 4, 2014
Not necessarily doomed!
In this world you will have trouble ...
After receiving the news Friday, I admit that we were pretty bummed! I had a really nice girls day out / birthday luncheon with all 3 of my girls on Saturday, which definitely helped take my mind off things. We laughed a lot and didn't talk about the big C. My worries lingered though, both before and after lunch. I shouldn't have, but I later reread the radiology reports, which made me feel doomed! But I'm realizing that I'm not necessarily doomed. I've been in this situation before, where all the tests indicated that I was on a fast track to death by cancer. That was 8 years ago! I just have to move forward with the new treatment plan and hope and pray for the best.
Dr. Coscio put me on some relatively high-dose steroids for now and the duration of radiation therapy, in an effort to reduce some inflammation seen around the epidural protrusion of the spinal bone mets. I think this is helping! I still have some weakness in the left leg, but not nearly as much pain. And I'm realizing that I feel much better than I look on paper! On paper: doomed. In person: a little tired, but alive! So I need to keep things in perspective.
Radiation yesterday was easy-peasy. Just as I remember it when I received radiation therapy to the chest 14 years ago. Because of the location this time, I was told that I may experience nausea and diarrhea. This would probably occur toward the end of the 2-week course because some of the radiation would inevitably hit some digestive system areas. Fingers crossed that this doesn't happen, or if it does, it's not too severe or longlasting.
I so so appreciate all the outpouring of support and prayers I've received from friends and family. It really is uplifting and encouraging to know that so many people care. I feel God communicating with me as well. It seems like every song on KSBJ is speaking His words to me! It may sound silly, but God's word in Christian music has a way of really ministering to me in times of need.
... But take heart! I have overcome the world! (John 16:33)
After receiving the news Friday, I admit that we were pretty bummed! I had a really nice girls day out / birthday luncheon with all 3 of my girls on Saturday, which definitely helped take my mind off things. We laughed a lot and didn't talk about the big C. My worries lingered though, both before and after lunch. I shouldn't have, but I later reread the radiology reports, which made me feel doomed! But I'm realizing that I'm not necessarily doomed. I've been in this situation before, where all the tests indicated that I was on a fast track to death by cancer. That was 8 years ago! I just have to move forward with the new treatment plan and hope and pray for the best.
Dr. Coscio put me on some relatively high-dose steroids for now and the duration of radiation therapy, in an effort to reduce some inflammation seen around the epidural protrusion of the spinal bone mets. I think this is helping! I still have some weakness in the left leg, but not nearly as much pain. And I'm realizing that I feel much better than I look on paper! On paper: doomed. In person: a little tired, but alive! So I need to keep things in perspective.
Radiation yesterday was easy-peasy. Just as I remember it when I received radiation therapy to the chest 14 years ago. Because of the location this time, I was told that I may experience nausea and diarrhea. This would probably occur toward the end of the 2-week course because some of the radiation would inevitably hit some digestive system areas. Fingers crossed that this doesn't happen, or if it does, it's not too severe or longlasting.
I so so appreciate all the outpouring of support and prayers I've received from friends and family. It really is uplifting and encouraging to know that so many people care. I feel God communicating with me as well. It seems like every song on KSBJ is speaking His words to me! It may sound silly, but God's word in Christian music has a way of really ministering to me in times of need.
... But take heart! I have overcome the world! (John 16:33)
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