It's about three miles from our new house to the office. How do I know? Well, I rode my bike to work today.
Despite having leg cramps all night long (please don't tell me to drink more water, I know!) my hips/pelvis weren't bothering me as much this morning so I thought it'd be a good idea to try a ride. Biking to work has pretty much zero climb (well, 112 feet but that might as well be nothing, over a few miles). It was actually chilly! I coughed a few times (which actually feels kind of good) but it went well.
I think what helped me be able to ride is the Flexeril I took last night, honestly. I started to get stiff and have pain about two hours after I got to work. I hope I can take it during waking hours, it'd be nice to have less pain/be pain free during the day.
Muscle relaxers aren't doing much for the leg cramps, though. The only way I ever have zero is if I lay flat on my back and am propped up somewhat. The act of shifting in bed, or moving my legs at all usually triggers the cramps. I will address it at the doctor tomorrow, but I'm hoping that they completely go away once the steroid is completely out of my system. I am on my last week of taper, and only take it every other day now (2mg versus 8mg in the beginning).
We're still getting settled in the new place - there are boxes everywhere! It's wonderful to be in the new place. It's beautiful and homey and just such a neat (big!) place to live.
Showing posts with label steroids. Show all posts
Showing posts with label steroids. Show all posts
Tuesday, July 29, 2014
Wednesday, July 23, 2014
Greetings, from infusion!
My internet connection isn't great, but I'm going to try and post a blog.
I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.
We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.
It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.
We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!
They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!
I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.
We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.
It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.
We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!
They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!
Tuesday, July 22, 2014
A lot on my plate...
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| Get it? |
We started moving stuff into the new place yesterday. It was so great to be able to go in and check things out. Can you believe I never actually looked at the bathroom? No claw foot tub, but it'll do. I love all the storage space we have. We bought a new bed, too. We'll have a guest bedroom and a bed for that as well. It feels like we're living in a real house (we kind of are!).
I'm continuing to taper the steroids. Yesterday was probably one of the worst (waking) days I've had with side effects. My face actually felt swollen (it still does, sort of) and I actually had cramping everywhere. My fingers seized up as I was slicing... An avocado (Gasp! More avocado talk! My interest in them is waning somewhat, though). My back tensed if I twisted a certain way, and my legs cramped several times throughout the day, while they normally only happened at night, before.
I was able to sleep pretty peacefully last night, I didn't wake up at all with a cramp - and actually didn't even take any muscle relaxers or pain medication. I took magnesium and potassium (as directed by the oncologist) before bed, so perhaps that's actually helping!
When I was told that I would start Carboplatin/Avastin/Alimta tomorrow, the doctor and nurse both told me to "eat up" because my appetite would go away, most likely. Today, I got similar advice in an online support group I post in:
"That's quite the combo you've got coming your way. I'm sure I don't need to tell you but eat up and drink up in the days before."
So, there it is. Tonight I think we're having barbecue (there's a rib place just down the street from our new place) and I've insisted on ice cream afterwards (if I am still hungry).
Speaking of barbecue, I am now somewhat fascinated by this list of the supposed 30 best BBQ places (according to OpenTable, anyway). Some of them aren't that far away from me and I'd kind of like to go to some of them.
I want to share something that has been going on for a while now, ever since I started having muscle weakness and pain associated with the steroids, anyway. I've been riding my bike to work but have found that my legs cannot carry me up the 5% grade to my house as of late. When I try, my legs will stiffen and cramp - I almost fell off my bicycle when I couldn't bend my knee to continue pedaling. My husband has been taking me home from work, putting the bicycle in the car. As much as I hate to do this, and as much as I wish I could ride more - I take so much pleasure in being able to make the short trip to work. Since I'm feeling a little better, I hope to take longer trips through the neighborhood's mostly flat roads.
It's such a little ride, but it's mine to make. I'm glad cancer hasn't taken that from me, and I'm glad that my husband is there to make sure I get home safely.
Thursday, July 17, 2014
Someone saw my legs off, please.
Let me preface this by saying two things. First, be warned that I am going to whine throughout this entire post. Secondly, you should know that I HATE FAMILY GUY.
Hate is a strong word, and a strong word is required for how I feel about Family Guy. I hate it.
But, this is pretty much me - yesterday and today.
Sometimes I feel bad for not taking pain medication, but then I'd be slow and groggy. I don't like narcotics. I worry about Advil/Tylenol affecting my liver and kidneys (doctors have said moderation is fine). The truth is that I simply do not like pain medications. I take a Flexeril at night in hopes that the pain in my legs will be better, but it doesn't seem to be working. I'm tapering the steroid per doctor instructions, I just have to hope it gets better as I continue to taper - and manage the pain as best as I can with, I don't know... Bananas?
Hate is a strong word, and a strong word is required for how I feel about Family Guy. I hate it.
But, this is pretty much me - yesterday and today.
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| Yeah, it's totally like that. (PS: I still hate Family Guy) |
The Dexamethasone can cause muscle cramps/weakness anyway - but it can be worse as you're tapering off the medicine. I'm drinking Gatorade, taking potassium and magnesium and still waking with leg cramps. In addition, I'm experiencing muscle weakness. I'm told this is normal - it's just annoying because for the past day or so now, I feel like I just shuffle along like an old lady (sorry to all the old ladies I know...I think you're adorable but when I imagine how I must look as I'm shuffling along in the grocery store yesterday, I totally picture you.)
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| I wish I could be so lively. |
To end on a positive note, there are lots of charity bike rides happening very soon for cancer research. One is Cleveland Clinic's VeloSano ride (this weekend), the Pan Ohio Hope Ride (end of the month) and Pelotonia (mid-August). Though every person has their own reason for doing the ride, I'm personally thankful for all of the people who are hopping on their bikes and hammering out some miles for a great cause.
Coming up next blog...
Thursday, July 10, 2014
It goes to show you never can tell.
A lot of this blog content has involved my recently discovered brain metastases - but my primary cancer is lung. When I was first diagnosed, I sat despondent in my hospital bed and looked at the survival rates for lung cancer. I tossed my phone to the bed with the screen faced down as if that would make the statistics on the screen disappear from existence.
The truth of the matter is, lung cancer affects everyone differently. I've been lucky enough to carry on most of my daily routines - and even ride my bike some. I plan to start resistance training next week, and really do want to start riding my bike a little more. The humidity and heat make riding up hills kind of tiring (there's a 5% grade I have to ride up every day I bike from work).
I biked 150 miles only a couple weeks before I was diagnosed - looking at me then (and even now) you wouldn't be able to tell that I have cancer at all.
The Lung Cancer Alliance has a page called Faces of Lung Cancer where those who are fighting or who have fought their own battles with lung cancer are encouraged to post photos of themselves in hopes to end some of the stigmas associated with lung cancer (as of this post, I'm on page 2!).
The point is, you cannot look at someone and begin to understand the hardships they could be facing at that very moment. I smile, and am positive as often as I possibly can be - but with smiles and hope, there is an all too real illness that if left unchecked, would undoubtedly take my life.
Take a moment and look at some of the people on the Faces of Lung Cancer page. If you click on individual images, you can see the stories of the people who have posted their pictures there. It doesn't have to be lung cancer, though - lots of people fight all kinds of battles every day and you'd never know it because it's not necessarily on display.
The truth of the matter is, lung cancer affects everyone differently. I've been lucky enough to carry on most of my daily routines - and even ride my bike some. I plan to start resistance training next week, and really do want to start riding my bike a little more. The humidity and heat make riding up hills kind of tiring (there's a 5% grade I have to ride up every day I bike from work).
I biked 150 miles only a couple weeks before I was diagnosed - looking at me then (and even now) you wouldn't be able to tell that I have cancer at all.
The Lung Cancer Alliance has a page called Faces of Lung Cancer where those who are fighting or who have fought their own battles with lung cancer are encouraged to post photos of themselves in hopes to end some of the stigmas associated with lung cancer (as of this post, I'm on page 2!).
The point is, you cannot look at someone and begin to understand the hardships they could be facing at that very moment. I smile, and am positive as often as I possibly can be - but with smiles and hope, there is an all too real illness that if left unchecked, would undoubtedly take my life.
Take a moment and look at some of the people on the Faces of Lung Cancer page. If you click on individual images, you can see the stories of the people who have posted their pictures there. It doesn't have to be lung cancer, though - lots of people fight all kinds of battles every day and you'd never know it because it's not necessarily on display.
My hair is doing this unruly fuzz thing, and I half expect it to start falling out soon (it could, as a side-effect of the radiation). If I had enough styling product and hair dye, I could seriously rock Anne Burrell's hair-do right now. I have that "I just stuck a fork in an outlet" look about me, right now. I'd post a picture but I'm rocking that fabulous "steroid skin" that I just love SO MUCH.
Did I mention I can start tapering off the steroids on Monday? I know I did, I just have to say it again because I am SO HAPPY ABOUT IT.
I'm editing this post to say that I did in fact just lose a chunk of hair. I'm not upset... It was just weird.
Wednesday, July 9, 2014
Seis Cuchillos de Cyber
Fun fact: 6 is the smallest positive integer which is neither a square number nor a prime number.
6 is also the number of CyberKnife treatment sessions I have completed. To review, the first session was to target all small tumors except the one in the mid-brain. The following 5 treatments were for the mid-brain tumor, which required lower doses of radiation.
Today, I am more tired than I can recall being in quite some time. I was told there'd be some blood drawn (I had a voice mail from my oncologist's nurse) but when I walked all the way to the place where they do draws for port people... Nothing. No orders on file. So, I head toward work. I work very close to where I have treatments (this is actually a wonderful thing) but the walk might as well have been ten miles today.
We're going out to celebrate tonight, barring any serious energy meltdown - we found a barbecue place outside of town and for some reason that just sounds really good to me. The 30+ minute drive to get there? Eh. I'll have to think about it.
The Radiation Oncologist said that the effects of the radiation are cumulative, and that includes side effects. So, the fatigue and any other fun stuff that might come along because of radiation should be in full force, and I believe it! I got the good news that I will be able to start scaling back the dosage on the steroid starting on Monday. I'll reduce the dose by half for a week, reduce it by a half again, and again... Until I'm taking 2mg every other day (I think).
I cannot believe I chose to work today. Had I known that the last session would make me so tired, I would have asked for the day off and I would have chosen to do absolutely NOTHING except lay around in the one room in our apartment that is air-conditioned. I feel very grateful however, that I have been well enough to work my shifts without problems.
Three cheers for being done with CyberKnife treatments!! (and, I got to keep my mask!!)
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| NOT CyberKnife. |
6 is also the number of CyberKnife treatment sessions I have completed. To review, the first session was to target all small tumors except the one in the mid-brain. The following 5 treatments were for the mid-brain tumor, which required lower doses of radiation.
Today, I am more tired than I can recall being in quite some time. I was told there'd be some blood drawn (I had a voice mail from my oncologist's nurse) but when I walked all the way to the place where they do draws for port people... Nothing. No orders on file. So, I head toward work. I work very close to where I have treatments (this is actually a wonderful thing) but the walk might as well have been ten miles today.
We're going out to celebrate tonight, barring any serious energy meltdown - we found a barbecue place outside of town and for some reason that just sounds really good to me. The 30+ minute drive to get there? Eh. I'll have to think about it.
The Radiation Oncologist said that the effects of the radiation are cumulative, and that includes side effects. So, the fatigue and any other fun stuff that might come along because of radiation should be in full force, and I believe it! I got the good news that I will be able to start scaling back the dosage on the steroid starting on Monday. I'll reduce the dose by half for a week, reduce it by a half again, and again... Until I'm taking 2mg every other day (I think).
I cannot believe I chose to work today. Had I known that the last session would make me so tired, I would have asked for the day off and I would have chosen to do absolutely NOTHING except lay around in the one room in our apartment that is air-conditioned. I feel very grateful however, that I have been well enough to work my shifts without problems.
Three cheers for being done with CyberKnife treatments!! (and, I got to keep my mask!!)
Tuesday, July 1, 2014
CyberKnife #3
Yeah, yeah. CyberKnife.
What's more important is... I had a NAP!!
I got to my appointment today at 11 and was told that there'd be a little bit of a delay, which was fine. I was falling asleep in the waiting room so my nurse actually asked me if I wanted to go lay down in a quiet area in a recliner - and that sounded so good! I didn't think I'd sleep at first, but they came back to get me at NOON and my nurse said I'd actually fallen asleep for a while.
I wrote the first part of this entry earlier in the afternoon. When I got home from work, I fell asleep again - and again after dinner for several hours! My only concern now is that it's a little past 1:00 in the morning and I'm due to be up in 4 hours for work. Strangely enough I'm starting to come to peace with my completely screwed up sleeping schedule. There have only been a couple of days where I've felt totally wiped out and thankfully, those have been on weekends. I woke up at 3:00 yesterday and managed to fall asleep for one hour on the couch before really waking up for work around 6.
I didn't have my own CD of music for CyberKnife again today. I'm not truthfully that upset by it, but listening to the music that other people have left behind from their treatments is a little weird in my mind. Lots of crooner music today, some of it kind of depressing. I sort of wondered why the person who left the CD chose the songs they did - if they put them in a melancholy or reflective state of mind... Or if it's just nostalgic music to them.
I still want to make a CD with science fiction music (I have already made a playlist on Spotify) and I'd love to leave it for someone else. I wonder what they'd think as they lay on the table, listening to the clicks and drone of the machine - all the while with the Star Trek: The Next Generation theme song in the background. Would they laugh (muffled of course, you can't even talk in that mask) or think it was completely weird that someone chose to have their treatment to that song? What if I followed it up with the Superman theme? I also considered having the theme from Rocky Horror Picture Show - not sure why except I do actually like that soundtrack.
The side effects are the same today, I'm tired (obviously!) and I have a little headache. I had a discussion with the nurse about the side effects from the steroids (skin issues and a little edema are the latest, but sleeplessness is a big one still) and she suggested that I take the second dose earlier in the day (2:00-ish instead of 5). I didn't have the pill bottle with me at work so I didn't get to try this today, but I will tomorrow.
One thing that's been happening the past day or so are TERRIBLE leg/feet cramps that aren't even in my calves. The top tendon of my feet and my ankles tense up so badly that my feet and toes curl upward and the pain is excruciating. It took several minutes of pained contortion/massaging of my feet (I tried standing up and placing my feet flat - OW) to get it to stop. It happened in the middle of the night last night and again this afternoon. I have been drinking Gatorade and water but know that I could always drink more. It's a horrible excuse, but water is so boring to me. I've been taking potassium, too. I brought it up to the nurse and we agreed again, that the dreaded Dexamethasone is likely to blame. It seems like such an innocuous drug to me, but I guess I'm wrong - it has wreaked more havoc on me than anything I've ever had to take before - and that includes chemotherapy (so far - keep in mind no IV yet and I know that's a whole new ballgame).
I suppose it's time to try and sleep again, I'm not sure how it will go. I had to take another Pepcid - I took one earlier but started to feel not so good again. There's a farmer's market happening Thursday on the campus of the hospital. I want to try and get there before or after treatment to see if they have strawberries. I know the season may be dwindling but I seriously want and need more! Yummy!
What's more important is... I had a NAP!!
I got to my appointment today at 11 and was told that there'd be a little bit of a delay, which was fine. I was falling asleep in the waiting room so my nurse actually asked me if I wanted to go lay down in a quiet area in a recliner - and that sounded so good! I didn't think I'd sleep at first, but they came back to get me at NOON and my nurse said I'd actually fallen asleep for a while.
I wrote the first part of this entry earlier in the afternoon. When I got home from work, I fell asleep again - and again after dinner for several hours! My only concern now is that it's a little past 1:00 in the morning and I'm due to be up in 4 hours for work. Strangely enough I'm starting to come to peace with my completely screwed up sleeping schedule. There have only been a couple of days where I've felt totally wiped out and thankfully, those have been on weekends. I woke up at 3:00 yesterday and managed to fall asleep for one hour on the couch before really waking up for work around 6.
I didn't have my own CD of music for CyberKnife again today. I'm not truthfully that upset by it, but listening to the music that other people have left behind from their treatments is a little weird in my mind. Lots of crooner music today, some of it kind of depressing. I sort of wondered why the person who left the CD chose the songs they did - if they put them in a melancholy or reflective state of mind... Or if it's just nostalgic music to them.
I still want to make a CD with science fiction music (I have already made a playlist on Spotify) and I'd love to leave it for someone else. I wonder what they'd think as they lay on the table, listening to the clicks and drone of the machine - all the while with the Star Trek: The Next Generation theme song in the background. Would they laugh (muffled of course, you can't even talk in that mask) or think it was completely weird that someone chose to have their treatment to that song? What if I followed it up with the Superman theme? I also considered having the theme from Rocky Horror Picture Show - not sure why except I do actually like that soundtrack.
The side effects are the same today, I'm tired (obviously!) and I have a little headache. I had a discussion with the nurse about the side effects from the steroids (skin issues and a little edema are the latest, but sleeplessness is a big one still) and she suggested that I take the second dose earlier in the day (2:00-ish instead of 5). I didn't have the pill bottle with me at work so I didn't get to try this today, but I will tomorrow.
One thing that's been happening the past day or so are TERRIBLE leg/feet cramps that aren't even in my calves. The top tendon of my feet and my ankles tense up so badly that my feet and toes curl upward and the pain is excruciating. It took several minutes of pained contortion/massaging of my feet (I tried standing up and placing my feet flat - OW) to get it to stop. It happened in the middle of the night last night and again this afternoon. I have been drinking Gatorade and water but know that I could always drink more. It's a horrible excuse, but water is so boring to me. I've been taking potassium, too. I brought it up to the nurse and we agreed again, that the dreaded Dexamethasone is likely to blame. It seems like such an innocuous drug to me, but I guess I'm wrong - it has wreaked more havoc on me than anything I've ever had to take before - and that includes chemotherapy (so far - keep in mind no IV yet and I know that's a whole new ballgame).
I suppose it's time to try and sleep again, I'm not sure how it will go. I had to take another Pepcid - I took one earlier but started to feel not so good again. There's a farmer's market happening Thursday on the campus of the hospital. I want to try and get there before or after treatment to see if they have strawberries. I know the season may be dwindling but I seriously want and need more! Yummy!
Sunday, June 29, 2014
Musings of a 5:00AM Baker
I'm not even going to try and pretend like the past few days have been 100% sunshine, because they haven't. I haven't been sleeping, which translates to early morning baking/cooking and binge watching Say Yes to the Dress on Netflix. This morning's episode involves a young girl who is buying her dream wedding dress - she's in remission from Stage IV lung cancer. I am totally crying.
Extreme insomnia started a few days ago when I woke up at 5:30 and proceeded to make a strawberry pie before I went to work. Saturday I was up at 4:00 in the morning. Today, I woke up at 3:00, but was able to nap on the couch (listening to Spotify on earbuds) for a little while. I woke up again at 5.
More Say Yes to the Dress.
More baking - a beer bread using a local (Westlake, Ohio) beer.
More frustration.
I have sleeping pills - Trazodone - which is actually an anti-depressant... I guess it's working because while I'm not sleeping very much, I'm not terribly sad about it. I think it's time to ask the doctor for something else. I have Ambien, but I don't like it, and I've said why before. I've actually got some Benadryl and a lot of sleep aids are actually antihistamines, so it's worth a shot. Some have also suggested melatonin.
My sister-in-law flew in yesterday and we had such a good time. We got brunch, and then went swimming in Lake Erie. I got a little sunburned (I have tried nearly EVERY sunscreen and there's really only been one that works so far) but I feel okay. I'm not on the chemotherapy at this time, but I still seem to be highly sensitive to the sun. To be fair, it's only been a week since I stopped so it's very likely it's still in my system. Either way, sunscreen is very important! A good friend of mine just bought this and it's cheaper than the other stuff, I've also read very good reviews for it, so I'm ordering it today.
Last night my mother and father-in-law and cousins went to dinner. The in-laws and my husband and I will be headed to brunch in a little while. I expect I will drink a lot of coffee. They're going home afterwards. I might try to sleep, then. I love my family so much - it means a great deal to me that they're here. I served them the strawberry pie I made, and it was a hit!!
My next radiation appointment is Tuesday!
Extreme insomnia started a few days ago when I woke up at 5:30 and proceeded to make a strawberry pie before I went to work. Saturday I was up at 4:00 in the morning. Today, I woke up at 3:00, but was able to nap on the couch (listening to Spotify on earbuds) for a little while. I woke up again at 5.
More Say Yes to the Dress.
More baking - a beer bread using a local (Westlake, Ohio) beer.
More frustration.
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| I have some jam with your name on it, bread. |
I have sleeping pills - Trazodone - which is actually an anti-depressant... I guess it's working because while I'm not sleeping very much, I'm not terribly sad about it. I think it's time to ask the doctor for something else. I have Ambien, but I don't like it, and I've said why before. I've actually got some Benadryl and a lot of sleep aids are actually antihistamines, so it's worth a shot. Some have also suggested melatonin.
My sister-in-law flew in yesterday and we had such a good time. We got brunch, and then went swimming in Lake Erie. I got a little sunburned (I have tried nearly EVERY sunscreen and there's really only been one that works so far) but I feel okay. I'm not on the chemotherapy at this time, but I still seem to be highly sensitive to the sun. To be fair, it's only been a week since I stopped so it's very likely it's still in my system. Either way, sunscreen is very important! A good friend of mine just bought this and it's cheaper than the other stuff, I've also read very good reviews for it, so I'm ordering it today.
Last night my mother and father-in-law and cousins went to dinner. The in-laws and my husband and I will be headed to brunch in a little while. I expect I will drink a lot of coffee. They're going home afterwards. I might try to sleep, then. I love my family so much - it means a great deal to me that they're here. I served them the strawberry pie I made, and it was a hit!!
My next radiation appointment is Tuesday!
Wednesday, June 18, 2014
Roid Rage
Out of all the medicines I've had to take since I was diagnosed with cancer, I am at my wit's end with one in particular. I feel like a child whining about this, but the steroid I'm on (Dexamethasone) really sucks. There's a laundry list of side effects, the worst (for me) being acid reflux. When I was not on the study drug, I was told I could take Pepcid/Nexium or other things like that. Now that I'm back on the study, drugs like those are a no-go. I have to rely on Tums or some other chewable stuff that doesn't really work. I wake up at least twice a week with reflux so bad I can't get back to bed for at least an hour.
Now, I'm broken out like a leper - and I've plastered myself in calamine all over my shoulders and neck. Yes, this is also evidently a side effect. I hate it. I keep reminding myself that I had horrible headaches before I started this medicine, that in an evening they went away and I slept peacefully - but seriously? There's no end. I looked at one side effect list, and I basically have all of the "minor" side effects. Come on.
In better news, the port area seems to be healing. There's some tenderness, part of me thinks there's a little bit of suture stuck in there, but overall it's not terribly bad. I can feel it "settling" (if that makes any sense) and that's a little surreal.
It's been very hot here. We put the air conditioner in the window and now I don't want to leave the bedroom. That's fair, right?
Oh and if you were wondering, I'm still addicted to avocado. Maybe that's a side effect. Probably. I'll enjoy this sweet romance while it lasts.
Now, I'm broken out like a leper - and I've plastered myself in calamine all over my shoulders and neck. Yes, this is also evidently a side effect. I hate it. I keep reminding myself that I had horrible headaches before I started this medicine, that in an evening they went away and I slept peacefully - but seriously? There's no end. I looked at one side effect list, and I basically have all of the "minor" side effects. Come on.
In better news, the port area seems to be healing. There's some tenderness, part of me thinks there's a little bit of suture stuck in there, but overall it's not terribly bad. I can feel it "settling" (if that makes any sense) and that's a little surreal.
It's been very hot here. We put the air conditioner in the window and now I don't want to leave the bedroom. That's fair, right?
Oh and if you were wondering, I'm still addicted to avocado. Maybe that's a side effect. Probably. I'll enjoy this sweet romance while it lasts.
Sunday, June 15, 2014
If hungry + angry = hangry...
Then does happy + tired = hired? I'm hired.
I feel sort of like this weekend flew by, and I'm not entirely sure I remember all of it!
My in-laws did come to visit yesterday - we went to dinner and then walked around at the beach for a little while. The night ended with liquid nitrogen churned ice cream from Piccadilly in Uptown (mmm, salted caramel!). I worked for a little while this morning and then had brunch with my in-laws and husband earlier today.
I'd felt out of sorts all afternoon after that, though. I ended up waking up VERY early this morning thanks to some horrible reflux (thanks a lot, steroids) and ended up staying up for almost two hours while I tried just about anything (Pepto, milk, ice cream, water...) to stop the acid reflux. 90 minutes later I had to wake up for work. We went to the grocery today and I felt compelled to sit down on the floor, my legs and feet didn't want to propel me forward anymore. Luckily, we made it home.
More about steroids, though - they're funny. I hear horror stories about people eating terrible things and eating a LOT - while I'll admit my appetite has been better than it usually is, I've been craving things like avocado/guacamole and this curry kraut made by a local company. I wonder what they taste like together... Heck, I even ate gorgonzola cheese on a salad yesterday and I liked it.
If I wasn't on this ALK study drug, handling steroid side effects would be MUCH easier. They usually prescribe Pepcid or something like it for the reflux, but I'm not supposed to take those things due to potential cardiac issues with the clinical trial drug. I got desperate tonight though, tired of the burning sore throat from stomach acid - I actually took a Pepcid tonight. I feel okay and don't plan on making a habit of it, but last night was so awful I didn't want a repeat later on tonight.
The surgery site for my port is looking good - it seems to be healing nicely. In a fit of desperation to ride my bike today, I biked the short distance to my office. It's about a mile and is normally no big deal, but when I had to get my upper body into the meager incline leading to the campus quad - I really felt a pretty significant ache in my shoulder where the port is. The pain went away after 5-10 minutes and there was no bleeding... But man, do I miss riding my bike. The legs are willing, but the arms don't want to play along yet. I also still have some pain reaching to the left side with my right arm. So far, this only comes into play when I shower - or if for some reason I'm trying to do it on purpose.
Tuesday is the set-up appointment for CyberKnife surgery. They'll do some scans and give me my plastic mask (I'm really looking forward to that one, yep. Sarcasm, by the way). It'll be a week or so before the real deal, so I get to mentally prepare... Some more. I'm so impatient. I want it now. I'm like Veruca Salt singing about her liver biopsy results, or something.
I want results...
I want Foundation...
Treatment, radiation
An Amish vacation!
GIVE IT TO ME NOW.
I feel sort of like this weekend flew by, and I'm not entirely sure I remember all of it!
My in-laws did come to visit yesterday - we went to dinner and then walked around at the beach for a little while. The night ended with liquid nitrogen churned ice cream from Piccadilly in Uptown (mmm, salted caramel!). I worked for a little while this morning and then had brunch with my in-laws and husband earlier today.
I'd felt out of sorts all afternoon after that, though. I ended up waking up VERY early this morning thanks to some horrible reflux (thanks a lot, steroids) and ended up staying up for almost two hours while I tried just about anything (Pepto, milk, ice cream, water...) to stop the acid reflux. 90 minutes later I had to wake up for work. We went to the grocery today and I felt compelled to sit down on the floor, my legs and feet didn't want to propel me forward anymore. Luckily, we made it home.
More about steroids, though - they're funny. I hear horror stories about people eating terrible things and eating a LOT - while I'll admit my appetite has been better than it usually is, I've been craving things like avocado/guacamole and this curry kraut made by a local company. I wonder what they taste like together... Heck, I even ate gorgonzola cheese on a salad yesterday and I liked it.
If I wasn't on this ALK study drug, handling steroid side effects would be MUCH easier. They usually prescribe Pepcid or something like it for the reflux, but I'm not supposed to take those things due to potential cardiac issues with the clinical trial drug. I got desperate tonight though, tired of the burning sore throat from stomach acid - I actually took a Pepcid tonight. I feel okay and don't plan on making a habit of it, but last night was so awful I didn't want a repeat later on tonight.
The surgery site for my port is looking good - it seems to be healing nicely. In a fit of desperation to ride my bike today, I biked the short distance to my office. It's about a mile and is normally no big deal, but when I had to get my upper body into the meager incline leading to the campus quad - I really felt a pretty significant ache in my shoulder where the port is. The pain went away after 5-10 minutes and there was no bleeding... But man, do I miss riding my bike. The legs are willing, but the arms don't want to play along yet. I also still have some pain reaching to the left side with my right arm. So far, this only comes into play when I shower - or if for some reason I'm trying to do it on purpose.
Tuesday is the set-up appointment for CyberKnife surgery. They'll do some scans and give me my plastic mask (I'm really looking forward to that one, yep. Sarcasm, by the way). It'll be a week or so before the real deal, so I get to mentally prepare... Some more. I'm so impatient. I want it now. I'm like Veruca Salt singing about her liver biopsy results, or something.
I want results...
I want Foundation...
Treatment, radiation
An Amish vacation!
GIVE IT TO ME NOW.
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