I thought I would check in since I hadn't posted since Rion finished his 2nd round of chemo last week. He is doing much better over all although we definitely still have good days & bad (he got sick at I-Hop last Saturday when we were eating breakfast; yet we had gone to Longhorn's Thursday night & he was fine?!?!) There is no clear pattern or indication when he is going to have a good or bad day so we try to just take it 1 day, 1 hour at a time and enjoy when he's feeling good and try to make him comfortable when he's not.
I am almost positive his levels (platelets/red blood cell/white blood cell) are doing just fine as he is not experiencing any bruising and his energy levels seem to be pretty good over all...he didn't take a nap yesterday for the first time in as long as I can remember; of course he had 3 naps on Saturday so it all evens out. A very, very smart person (who has gone through the same thing) told me the best advice I have heard thus far: don't let your highs be too high and don't let your lows be too low. That is my new motto to live by!
Just in case anyone was wondering, I am doing much better also. The anti-depressant I started on almost 3 weeks ago seems to be helping and I'm slowly getting back into exercising and taking care of myself. After over indulging on just about everything this past weekend, I am also trying to be more mindful of my eating since there is a direct correlation between what I eat & how I feel ie. if I eat junk, I feel like junk.
Rion's next doctor's appointment for blood work is Tuesday June 12th and I might not post any more until then as nothing much is really happening. Rion will be getting his first disability check in June, just in the nick of time as more and more claims have been processed from surgery and we're starting to get bills in the mail almost every day...bills that we can't pay HA HA!
I would like to ask that everyone say a pray for some new friends of ours that we met online through the blog- John & Allyson. John had surgery last week for a brain tumor and they have yet to get the pathology report back. They are young (John is the same age as Rion) & recently married and I HATE that they are having to go through this (although it is nice to have someone that truly understands what we're going through.) Please help us pray that they have the strength to face whatever results they are given- prayer for both John & Allyson as I've found the patient gets A LOT more prayer than the care giver especially when awaiting test results.
Blessings,
Emily
Wednesday, May 30, 2012
Wednesday, May 23, 2012
Doing better
Rion had a much, much better day yesterday!! He ate good all day and even felt like taking a small walk when I got home from work & spending some time outside. He had a good dinner and slept like a rock all night. I'm AMAZED at how different he was physically & mentally from Monday to Tuesday but I am definitely not complaining. Today has started off very good also and we're both relieved that tonight is the last night of taking chemo until next month.
Thank you all for your thoughts & prayers!
Emily
Thank you all for your thoughts & prayers!
Emily
Tuesday, May 22, 2012
1/2 way there
As those of you who are friends with me on Facebook already know, yesterday was rough on Rion (and myself.) He did really good on Sunday, in fact it was nearly impossible to even tell that he had started back on his chemo the night before- he was up and about early doing his usual weekend stuff- cutting grass, running errands, eating good for breakfast & lunch, basically just being his normal self. By Sunday night I could tell things were starting to hit him because he wasn't able to eat more than a few bites of dinner before feeling nauseous and having to stop. That night he forgot to take his anti-anxiety/sleeping medicine which caused him to not sleep very well and start off Monday feeling tired and weak. I made him a smoothie/milk shake for breakfast yesterday morning which he was able to drink eventually but he had a hard time eating for the rest of the day. Things went down hill in the late afternoon/early evening when he got sick while taking a bath. He ended up taking a phenegren around 5:30 which caused him to sleep for over 2 hours (but it also prevented him from vomiting any more.) Luckily he was able to eat about 1/2 a can of soup before taking his medication at 8:30 and entering into the hour long fast he has to do each evening before he takes his chemo at 9:30...we did remember to give him a sleeping pill at 8:30 so after taking his chemo he was out for the night.
He says he slept well last night but I'm not sure how accurate that is- at one point I found him asleep on the couch in the middle of the night (he said he got up to get a glass of milk and sat down for a second and must have fallen asleep.) He didn't want me to make him any breakfast this morning before I left but we discussed a few easy options for what he could have so hopefully he'll feel up to it. During these 5 days I'm just glad if he'll eat ANYTHING but I really think that eating healthier will give him more energy and be less likely to upset his stomach. (He ate a small fast food hamburger yesterday afternoon and I have my suspicions that upset his stomach- but when he says that's all that sounds good it's hard to discourage him from eating something.) Just tonight and tomorrow night left and then we can start recovering. I can't imagine what it's going to be like next month when they increase his dosage.
Of course I am trying to remain strong and positive but it's so incredibly hard! I come home from working all day and running a few errands and sit there by myself for 2 hours trying to think of anything I can do to help him out, I don't want to be loud and wake him up (our house is pretty small) and I don't have the energy or motivation to get off the couch and exercise or call a friend. Basically I just sit there alone with my thoughts trying to distract myself with whatever crap is on TV (Basketball Wives, really, could TV get any worse?!?!) I'm relieved that Rion is able to get up for about an hour but I'm still conscious of the noise level in the house and not wanting to heat up any food with strong smells that might upset his stomach again. I shush the dogs and keep them out of his lap and try to make things as pleasant as possible for him. But then it's time for bed and I can't help but wonder if tomorrow (today) is going to be the same way. Will I hardly get to see my husband at all? Will he be sick, miserable for the majority of the day? What can I make him to eat that he'll a) like and b) won't upset his stomach?
Is this how it's going to be for the next 10 months?
He says he slept well last night but I'm not sure how accurate that is- at one point I found him asleep on the couch in the middle of the night (he said he got up to get a glass of milk and sat down for a second and must have fallen asleep.) He didn't want me to make him any breakfast this morning before I left but we discussed a few easy options for what he could have so hopefully he'll feel up to it. During these 5 days I'm just glad if he'll eat ANYTHING but I really think that eating healthier will give him more energy and be less likely to upset his stomach. (He ate a small fast food hamburger yesterday afternoon and I have my suspicions that upset his stomach- but when he says that's all that sounds good it's hard to discourage him from eating something.) Just tonight and tomorrow night left and then we can start recovering. I can't imagine what it's going to be like next month when they increase his dosage.
Of course I am trying to remain strong and positive but it's so incredibly hard! I come home from working all day and running a few errands and sit there by myself for 2 hours trying to think of anything I can do to help him out, I don't want to be loud and wake him up (our house is pretty small) and I don't have the energy or motivation to get off the couch and exercise or call a friend. Basically I just sit there alone with my thoughts trying to distract myself with whatever crap is on TV (Basketball Wives, really, could TV get any worse?!?!) I'm relieved that Rion is able to get up for about an hour but I'm still conscious of the noise level in the house and not wanting to heat up any food with strong smells that might upset his stomach again. I shush the dogs and keep them out of his lap and try to make things as pleasant as possible for him. But then it's time for bed and I can't help but wonder if tomorrow (today) is going to be the same way. Will I hardly get to see my husband at all? Will he be sick, miserable for the majority of the day? What can I make him to eat that he'll a) like and b) won't upset his stomach?
Is this how it's going to be for the next 10 months?
Friday, May 18, 2012
All ready for round 2
Today was Rion's first trip to the medical oncologists office all by himself!! I felt like a mother letting her son go off to school for the 1st time- I was afraid he would forget to ask the doctor something, or they'd have trouble drawing blood and I wouldn't be there to hold his hand, basically I was afraid I would be needed but I wouldn't be there. But of course everything went fine & Rion probably enjoyed NOT having me there to butt in all the time & ask a million questions : )
He got the all-clear this morning from the medical oncologist to start his next round of Temodar tomorrow. There was a small concern that his white blood cells might not be high enough because they were slightly low last week but they have rebounded nicely and are perfect now. We were also concerned because Rion still has frequent bruising on his legs of unknown origin which before indicated that his platelets were low; this time the doctor says it's due to spatial awareness, more specifically his lack there of. Even though his vision is spot on, Rion still runs into things frequently because he isn't as acutely aware of his body positioning at all times like most people are. But this, like everything else so far, is just a minor inconvenience and isn't really a hindrance on every day life.
We feel much, much more prepared as far as what to expect from the Temodar & how to be pro-active instead of re-active. We are going to keep Rion on round-the-clock anti-nausea medication even if he is feeling good since last time he suffered from vomiting with no nausea (which the doctor says can be controlled with anti-nausea meds.) We are planning a very low key week next week and next weekend. I'm going to have healthy, mild dinners for us each night so if he does feel up to eating it should be easy on his stomach. Additionally he is going to make a conscious effort to snack frequently and eat small meals so there is always food in his stomach- another way to combat the vomiting (and I bet it will help with fatigue too.) And no alcohol for the 5 days he is on chemo...I know that drinking at all on anti-seizure medication is controversial but both sets of oncologists agree that one drink a day is fine. It may seem silly but with everything Rion has had to give us, letting him have a beer every now & then is really important to maintain a sense of normalcy. However it didn't seem to go over so well last time he was actively taking the chemo so we're cutting it out this time.
I'm not going to lie, the first round of chemo sucked. We were constantly faced with new (and worsening) side effects and it felt like each time we found something that helped alleviate the problem then something new would come up. Now we have an arsenal of tools to use instead of scrambling around using trial & error to figure out what works. Irregardless, we are both apprehensive about this up coming week.
One last tid bit, the doctor indicated this morning that they will more than likely increase his dosage of Temodar after this month if everything goes ok and his levels remain up or don't dip too much. Hopefully that won't cause the side effects to be unbearable and Rion will be able to manage it for the 10 months that he will have on that dosage. It's hard not to feel like we are "losing" a year to the chemo (a year and a half if you go back to when this all started last November) but I keep telling myself it will all be worth it if he continues to have consistent MRI's (I'm not saying clear in light of the information that we received last week that there is in fact still iffy spots on the MRI.) I'm already ready to have this all behind us and have Rion back to his old self. But maybe I'm holding on to an unrealistic expectation and should just be grateful for every day we have together, I am definitly grateful that God has given us more time together!
I hope everyone has a great weekend!
Emily
He got the all-clear this morning from the medical oncologist to start his next round of Temodar tomorrow. There was a small concern that his white blood cells might not be high enough because they were slightly low last week but they have rebounded nicely and are perfect now. We were also concerned because Rion still has frequent bruising on his legs of unknown origin which before indicated that his platelets were low; this time the doctor says it's due to spatial awareness, more specifically his lack there of. Even though his vision is spot on, Rion still runs into things frequently because he isn't as acutely aware of his body positioning at all times like most people are. But this, like everything else so far, is just a minor inconvenience and isn't really a hindrance on every day life.
We feel much, much more prepared as far as what to expect from the Temodar & how to be pro-active instead of re-active. We are going to keep Rion on round-the-clock anti-nausea medication even if he is feeling good since last time he suffered from vomiting with no nausea (which the doctor says can be controlled with anti-nausea meds.) We are planning a very low key week next week and next weekend. I'm going to have healthy, mild dinners for us each night so if he does feel up to eating it should be easy on his stomach. Additionally he is going to make a conscious effort to snack frequently and eat small meals so there is always food in his stomach- another way to combat the vomiting (and I bet it will help with fatigue too.) And no alcohol for the 5 days he is on chemo...I know that drinking at all on anti-seizure medication is controversial but both sets of oncologists agree that one drink a day is fine. It may seem silly but with everything Rion has had to give us, letting him have a beer every now & then is really important to maintain a sense of normalcy. However it didn't seem to go over so well last time he was actively taking the chemo so we're cutting it out this time.
I'm not going to lie, the first round of chemo sucked. We were constantly faced with new (and worsening) side effects and it felt like each time we found something that helped alleviate the problem then something new would come up. Now we have an arsenal of tools to use instead of scrambling around using trial & error to figure out what works. Irregardless, we are both apprehensive about this up coming week.
One last tid bit, the doctor indicated this morning that they will more than likely increase his dosage of Temodar after this month if everything goes ok and his levels remain up or don't dip too much. Hopefully that won't cause the side effects to be unbearable and Rion will be able to manage it for the 10 months that he will have on that dosage. It's hard not to feel like we are "losing" a year to the chemo (a year and a half if you go back to when this all started last November) but I keep telling myself it will all be worth it if he continues to have consistent MRI's (I'm not saying clear in light of the information that we received last week that there is in fact still iffy spots on the MRI.) I'm already ready to have this all behind us and have Rion back to his old self. But maybe I'm holding on to an unrealistic expectation and should just be grateful for every day we have together, I am definitly grateful that God has given us more time together!
I hope everyone has a great weekend!
Emily
Tuesday, May 15, 2012
Eye exam
Rion went this morning to have his eyes examined and everything looks good! The radiation oncologist had recommended that we do this to check for any changes in vision both now and in the next few months when the delayed side effects of radiation treatment may occur. The optometrist did say that he has astigmatism in his left eye but it's very possible he has had it for quite some time and it's not necessarily a side effect from treatment. The astigmatism is very slight, definitely not bad enough to warrant glasses or surgery. Rion went ahead and scheduled a follow up exam for 6 months to so we can check for any changes in his vision. We are very relieved to know his vision has not suffered since this was one of our major concerns with undergoing radiation treatment!
Thursday, May 10, 2012
Misled or mistaken?
Today's was Rion's first blood work since he started his new chemo regiment last month and the results are good: his platelets are really good (170 I think) and the only think that is slightly off is his white blood cells. We are going back next Friday to repeat the blood work and make sure everything is set for Rion to start his chemo again on May 19th. The doctor will call in another prescription for the chemo to be delivered next week and then we're all set to go at it again. Hopefully we'll have a better handle on the side effects this time and Rion won't be as sick as he was before.
Unfortunately something else happened at the appointment that I can't let go of. Duke sent down a very comprehensive summary of our appointments up there last month along with a verbal description of the MRI Rion had. For some reason the oncologist in Athens felt that we needed a copy of this. When we were up there all they told us and pointed out on the MRI were good things: re-sectioning cavity closing up, iffy spots from Feb MRI gone, & swelling gone down. Well...according to the report there is a new area of concern, approximately 4mm in size, on the edge of the re-sectioning cavity that is most likely more of the same iffy spots we saw before. There is still some possibility that it could just be swelling from the radiation which the oncologist today was quick to point out. But then why would the report say that it's "most likely" to be residual from the cancerous areas we saw in February? I am having a very hard time with this. The doctor agreed that we would need to have additional MRI's (told him the next one is scheduled for June 27th) and he said that the chemo dosage would be adjusted (increased) if this area grew larger. Why would he even mention that if he thought it was just swelling from the radiation?
Could it already be growing back?
So...while we had a good appointment for the most part I am stuck on this and can't let it go. We will get a chance to talk with the doctor again next Friday to discuss the blood work and I'm torn about what to do: do I ask him to be more thorough explaining what they think this area is on the MRI and risk getting more information than I want to know? Or do we just play along and accept everything the doctors say at face value? The one complaint (compliment?) I have about every single doctor we've seen is that no one has mentioned the chance of Morton coming back or how long it will take before he does. Yes, you can tell me to stay positive and pray that God will heal Rion (after all, He has already brought him through surgery & radiation with minimal side effects) but let's be realistic: how many people do you know who were diagnosed with a malignant brain tumor and are still living 10? 15? 20 years later? The book that everyone keeps telling me to read, the one that I can't remember the name of but it was written by a brain tumor "survivor," yeah, if you google him, you'll find out that he recently passed away FROM BRAIN CANCER. Um, not much inspiration there folks. I want to believe that after this year of chemo we'll never have to deal with Morton or cancer again but realistically I know that's not likely. And today for the first time I felt like the doctors know that as well, no matter how guarded they are with their words or how quick they are to smooth things over when they feel like they've said too much. Maybe it's time to start asking the hard questions and accepting things that we've ignored up until this point.
Sorry that this update isn't all puppies and rainbows but I'm not feeling very puppies and rainbow-y today.
Emily
Unfortunately something else happened at the appointment that I can't let go of. Duke sent down a very comprehensive summary of our appointments up there last month along with a verbal description of the MRI Rion had. For some reason the oncologist in Athens felt that we needed a copy of this. When we were up there all they told us and pointed out on the MRI were good things: re-sectioning cavity closing up, iffy spots from Feb MRI gone, & swelling gone down. Well...according to the report there is a new area of concern, approximately 4mm in size, on the edge of the re-sectioning cavity that is most likely more of the same iffy spots we saw before. There is still some possibility that it could just be swelling from the radiation which the oncologist today was quick to point out. But then why would the report say that it's "most likely" to be residual from the cancerous areas we saw in February? I am having a very hard time with this. The doctor agreed that we would need to have additional MRI's (told him the next one is scheduled for June 27th) and he said that the chemo dosage would be adjusted (increased) if this area grew larger. Why would he even mention that if he thought it was just swelling from the radiation?
Could it already be growing back?
So...while we had a good appointment for the most part I am stuck on this and can't let it go. We will get a chance to talk with the doctor again next Friday to discuss the blood work and I'm torn about what to do: do I ask him to be more thorough explaining what they think this area is on the MRI and risk getting more information than I want to know? Or do we just play along and accept everything the doctors say at face value? The one complaint (compliment?) I have about every single doctor we've seen is that no one has mentioned the chance of Morton coming back or how long it will take before he does. Yes, you can tell me to stay positive and pray that God will heal Rion (after all, He has already brought him through surgery & radiation with minimal side effects) but let's be realistic: how many people do you know who were diagnosed with a malignant brain tumor and are still living 10? 15? 20 years later? The book that everyone keeps telling me to read, the one that I can't remember the name of but it was written by a brain tumor "survivor," yeah, if you google him, you'll find out that he recently passed away FROM BRAIN CANCER. Um, not much inspiration there folks. I want to believe that after this year of chemo we'll never have to deal with Morton or cancer again but realistically I know that's not likely. And today for the first time I felt like the doctors know that as well, no matter how guarded they are with their words or how quick they are to smooth things over when they feel like they've said too much. Maybe it's time to start asking the hard questions and accepting things that we've ignored up until this point.
Sorry that this update isn't all puppies and rainbows but I'm not feeling very puppies and rainbow-y today.
Emily
Monday, May 7, 2012
More about me than Rion
I've been racking my brain all weekend for something to blog about but there just really isn't anything new to say about Rion. He is doing very good for the most part- he still takes a nap (or 2) most days and this weekend he slept for 12 hours each day including all his napping. I don't think his platelets are down because he doesn't have any unusual bruising like he did before. We'll know for sure Thursday when he goes for his first round of blood work since completing cycle 1 of 12 of the new chemo regiment 2 weeks ago. That is how this cycle will work- take chemo days 1-5, blood work on (or around) days 21 & 28 and then start chemo again on day 29 (day 1 of new cycle.) The running joke is now that Rion has a "cycle" and a bad week each month : )
I, however, finally made the time to address some issues I've been having and stopped ignoring them hoping they would just go away. I am doing MUCH better since I went to the doctor last Thursday and got validation that I'm not going crazy but just really, really stressed. I haven't mentioned it much here except for comments in passing but I've been having kinda a rough time lately. I think it's knowing that we're going to be dealing with this for at least another year that just makes me feel worn out mentally. At first I was all gung-ho and energized to do whatever I needed to do to get us through this but the initial motivation has worn off and now I just feel drained and tapped out. I have battled with depression in the past and I decided now was as good a time as any to start back on anti-depressant medication; after all Rion has been on an anti-depressant since he was diagnosed back in November so it makes sense I might benefit as well. I also got a refill on my migraine medication so I won't have to suffer as much when I get one of the horrible headaches I've been plagued with lately.
It's not so much the prescriptions that made me feel better but just talking with the doctor and having her acknowledge that I've take on A LOT lately and it's time to cut myself some slack and quit trying to be a perfectionist- maybe this spring wasn't the best time to start training for a 10K & taking off the few extra pounds I had put on over the winter...instead I ended up totally burnt out on exercise and faced with closer to 10 pounds that have accumulated since November. Enough is enough! Putting my nose to the grindstone and obsessing over every little thing wasn't helping me get anywhere. I am now making a conscious effort to chill out and just focus on my health and staying sane so I can be the best possible care giver for Rion.
Being a caregiver is much harder (and also much more rewarding) that I ever thought it would be. But the saying that you have to take care of yourself first in order to be a good caregiver are definitely words to live by. I've always had trouble with making time for myself because I've always been more of a people pleaser, gaining satisfaction from taking care of others instead of myself. The way I look at it now is that by taking care of myself I am able to take better care of Rion and that keeps the people pleaser side of me happy!
That's all for today- I'll be back after our appointment Thursday to let everyone know how Rion's blood work turned out.
Blessings,
Emily
I, however, finally made the time to address some issues I've been having and stopped ignoring them hoping they would just go away. I am doing MUCH better since I went to the doctor last Thursday and got validation that I'm not going crazy but just really, really stressed. I haven't mentioned it much here except for comments in passing but I've been having kinda a rough time lately. I think it's knowing that we're going to be dealing with this for at least another year that just makes me feel worn out mentally. At first I was all gung-ho and energized to do whatever I needed to do to get us through this but the initial motivation has worn off and now I just feel drained and tapped out. I have battled with depression in the past and I decided now was as good a time as any to start back on anti-depressant medication; after all Rion has been on an anti-depressant since he was diagnosed back in November so it makes sense I might benefit as well. I also got a refill on my migraine medication so I won't have to suffer as much when I get one of the horrible headaches I've been plagued with lately.
It's not so much the prescriptions that made me feel better but just talking with the doctor and having her acknowledge that I've take on A LOT lately and it's time to cut myself some slack and quit trying to be a perfectionist- maybe this spring wasn't the best time to start training for a 10K & taking off the few extra pounds I had put on over the winter...instead I ended up totally burnt out on exercise and faced with closer to 10 pounds that have accumulated since November. Enough is enough! Putting my nose to the grindstone and obsessing over every little thing wasn't helping me get anywhere. I am now making a conscious effort to chill out and just focus on my health and staying sane so I can be the best possible care giver for Rion.
Being a caregiver is much harder (and also much more rewarding) that I ever thought it would be. But the saying that you have to take care of yourself first in order to be a good caregiver are definitely words to live by. I've always had trouble with making time for myself because I've always been more of a people pleaser, gaining satisfaction from taking care of others instead of myself. The way I look at it now is that by taking care of myself I am able to take better care of Rion and that keeps the people pleaser side of me happy!
That's all for today- I'll be back after our appointment Thursday to let everyone know how Rion's blood work turned out.
Blessings,
Emily
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