No chemo again this week. Rion's white blood cells have gone down even further than they were last week and the risk of infection is too great to try and take another cycle right now. The local oncologist wants him to bring his medication with him next week so they can discuss lowering his dosage so he'll be able to take at least something instead of staying off chemo completely. Rion is going to call Duke today and relay all of this information and get their opinion.
The shingles continue to be painful but as long as Rion stays on top of it he can keep it from being unbearable. Right now that means taking the maximum amount of pain medication but if it's working, whatever. Of course we are rightfully concerned about him getting hooked on the stuff but they'll be plenty of time later to worry about that we he isn't in constant pain. The oncologist today gave him a few extra days worth of Acyclovir to take after the initial 10 days are up. We also found last night that calamine lotion helps as well as soaking in a bath of domeboro or using it to make compresses. The blisters continue to get bigger but some areas did seem to show signs of improvement this morning.
Hopefully this will clear up soon, the white blood cells will rebound and we'll be back on track to at least take some, any, dosage of chemo. I'm "grounding" Rion and doing all the grocery shopping, errand running to lessen his chances of coming in contact with any sickies. It's a miracle (thank you God) that we survived the trip to the ER on Sunday.
Blessings,
Emily
Tuesday, July 31, 2012
Monday, July 30, 2012
Shingles
Guess where we got to spend our Sunday?!?!
Poor Rion has shingles : ( It's around the lower left side of his back, top of his left leg and wrapping around to the middle of his torso on the left side. I am going to put some pictures at the bottom but I'm putting them after a break where you'll have to click through to see them just in case anyone doesn't want to.
Hopefully because we caught it early it will not get much, if any, worse and he'll continue being able to deal with the pain. This all started last week when he was complaining about his left hip & leg being sore and we couldn't figure out what had caused it. Then on Friday morning he woke up with 3 big bumps that I thought were bug bites (I didn't see them until after he messed with them but he said they were filled with lots of fluid- which he proceeded to expel, naturally LOL) By Saturday morning he had a flat rash that went in spots from the middle of his back to the middle of his stomach on his left side. Saturday afternoon while swimming we realized the rash was raised and seemed to be spreading. We discussed going to the hospital Saturday night but it had been a really, really long day and we both wanted to sleep. Yesterday (Sunday) morning we woke up and there was no doubt in our minds we needed to do something about this- it was starting to hurt and the rash consisted of clusters of boils. Following the guidelines set up by Duke we called the local oncologists office and spoke with the oncologist on call who told us it sounded like shingles but she wanted us to immediately go and get it checked out (we were hoping to wait until tomorrow (Tuesday) when Rion already has an appointment scheduled with his oncologist for blood work.) This and Rion's best friend Phillip who said it sounded like shingles prompted us to go ahead and head to the ER.
It really wasn't a bad experience as far as weekend trips to the ER are concerned. We stopped and bought Rion a mask to wear so he would be less likely to pick up anything from all the sickies and once the nurses heard that he had cancer and was on chemo (about 15 minutes after getting there) we were whisked away to our own room. I can not say enough good things about Athens Regional Medical Center. That's where Rion was taken last year when he had the seizure and they were the ones to diagnose him with a brain tumor- in the exact same ER we sat together yesterday. It was a little upsetting for me to be back there where it all began but having Rion coherent and able to talk and keep my mind off of that made it not too bad. They gave him an infusion of acyclovir over the course of an hour and sent us home with an additional 10 days worth of anti-viral medication as well as some pain medication. Unfortunately Rion is having to take a lot of the pain medication because the rash is painful to the touch as well as leaving his leg/hip really sore. But we are just happy we caught it when we did and optimistic that by hitting it hard & fast he'll get over this quickly with relatively little pain.
I have no clue what this means for his chemo that we were hoping to start this week. Logic tells me they are going to put it off again, even if his counts are back up. We'll be confirming with Duke whatever the local oncologist recommends and hopefully coming to an agreement that everyone is happy with.
Thank you all for your continued prayers. We really, really had a great time with the Harris family at the reunion this past Saturday- love you guys and thank you from the bottom of my heart for being so loving & supportive!
Emily
Thursday, July 26, 2012
Chemo on hold again
We're playing the wait and see game again in regards to Rion's next round of chemo that was supposed to start last night. When he went to the doctor Friday for his last blood work his platelets were only at 60,000 (the lowest they had dropped previously was 70,000 and that was at the very end of his concurrent chemo & radiation treatment.) In addition his neutrophil (type of white blood cells- read more about them here) are lower than they have been before and even though his white blood cells as a whole are ok, we don't want the neutrophil to go any lower. Rion e-mailed his blood work to Duke last Friday and they called him Monday & told him to go back Tuesday to get it checked again because they really want his platelets to be at at least 100,000 before taking any more chemo. Well as of Tuesday they are only up 1,000 to 61,000. So...no chemo for right now. Rion will go back next Tuesday to have blood work done again and fingers crossed everything will be back up. We are both ready to get this over and done with and with only 3 rounds to go it feels soooooooo close! Plus we had really wanted to get 2 rounds in before Duke next month (appointment on the 28th) so there would only be 1 more cycle to finish before the 6 months would be up. There is also that persistent nagging suspicion that every time we delay chemo we are letting the tumor grow back. Highly unlikely but it's hard not to feel that way.
We should have known his platelets were low because he has a lot of unexplained bruising on his legs. He has also been more tired than normal but we thought that was because he has been so much busier and dealing with the horrible heat/humidity (might break another record high again today for my non-local readers and the heat index will be over 100F.) Rion was able to get a handicapped parking tag to minimize the amount of walking out in the sun he has to do when he runs errands. The days he is taking chemo it is especially hard on him to be out and about but he doesn't want to feel like he is stuck at home. The front row parking is kinda nice but I feel guilty "enjoying" this perk, like it's some how wrong. I don't know, Rion says I'm crazy (which we already knew.)
Rion is feeling really good & upbeat, going about life as normal. I am pretty much doing the same. I do notice that we're starting to settle back into our old ways of acting like a "normal" married couple instead of one that just received devastating news. We've been arguing about stupid stuff from time to time but now I feel overwhelming guilt when it happens- like I am just asking for something to go wrong and make me really regret being anything but a stellar wife. I have noticed this happening more and more lately as we move out of the initial shock phase and into the new normal lives where treatment isn't the main focus. The bills can no longer be ignored and it's time to quit neglecting everything else in life that must be dealt with. Everyone continues to tell me what am amazing and wonderful wife I am and how lucky Rion is to have me but all I see are my flaws and how I still criticize and refuse to give in on the things we don't see eye to eye about. My stubborn side seems to be winning against my protective/nurturing side! I guess it's all about balance and now more than ever remembering to bite my tongue and not lash out when things upset me. Not to make Rion seem like a perfect angel but he hardly ever gets upset with me and that just makes me feel more rotten for having a temper like I do.
So...if anyone else stumbles upon this and happens to be going through something similar just know that you're not alone...and I'd love to hear from you since I haven't come across anyone in a similar situation. Getting through the devastating part when we clung together and to our faith was almost easier than trying to figure out where to go from here.
One last piece of (good) news- 2-3 months after finishing the paper work with Merck, as of this week they have finally paid 100% of Rion's chemo cost (was costing us $100 a cycle in addition to the initial $480) AND we are getting reimbursed for everything we have paid out of pocket for chemo up until this point. That is HUGE because it will allow us to pay off the credit card within the next month or 2 and be credit card debt free for the first time in a year!!! (I LOATHE credit card debt.)
Speaking of which, does anyone have experience working with a debt consolidation company??? I am having trouble keeping track of the 12 or so outstanding medical balances that we owe and I've missed a few payments here & there. It would be so much easier if we could just make 1 payment every month and have someone else divide it up for us for...but i don't want to pay interest. Is that even possible?? I feel like I am going to be an expert in so many different areas that I didn't have a clue about 8 months ago- lucky me right?!
This has gone on long enough. I'll check back soon to let everyone know when we start chemo again so we can all pray for minimal side effects...it worked last time which is why we're so gung-ho to get at it again and get it over with.
Emily
We should have known his platelets were low because he has a lot of unexplained bruising on his legs. He has also been more tired than normal but we thought that was because he has been so much busier and dealing with the horrible heat/humidity (might break another record high again today for my non-local readers and the heat index will be over 100F.) Rion was able to get a handicapped parking tag to minimize the amount of walking out in the sun he has to do when he runs errands. The days he is taking chemo it is especially hard on him to be out and about but he doesn't want to feel like he is stuck at home. The front row parking is kinda nice but I feel guilty "enjoying" this perk, like it's some how wrong. I don't know, Rion says I'm crazy (which we already knew.)
Rion is feeling really good & upbeat, going about life as normal. I am pretty much doing the same. I do notice that we're starting to settle back into our old ways of acting like a "normal" married couple instead of one that just received devastating news. We've been arguing about stupid stuff from time to time but now I feel overwhelming guilt when it happens- like I am just asking for something to go wrong and make me really regret being anything but a stellar wife. I have noticed this happening more and more lately as we move out of the initial shock phase and into the new normal lives where treatment isn't the main focus. The bills can no longer be ignored and it's time to quit neglecting everything else in life that must be dealt with. Everyone continues to tell me what am amazing and wonderful wife I am and how lucky Rion is to have me but all I see are my flaws and how I still criticize and refuse to give in on the things we don't see eye to eye about. My stubborn side seems to be winning against my protective/nurturing side! I guess it's all about balance and now more than ever remembering to bite my tongue and not lash out when things upset me. Not to make Rion seem like a perfect angel but he hardly ever gets upset with me and that just makes me feel more rotten for having a temper like I do.
So...if anyone else stumbles upon this and happens to be going through something similar just know that you're not alone...and I'd love to hear from you since I haven't come across anyone in a similar situation. Getting through the devastating part when we clung together and to our faith was almost easier than trying to figure out where to go from here.
One last piece of (good) news- 2-3 months after finishing the paper work with Merck, as of this week they have finally paid 100% of Rion's chemo cost (was costing us $100 a cycle in addition to the initial $480) AND we are getting reimbursed for everything we have paid out of pocket for chemo up until this point. That is HUGE because it will allow us to pay off the credit card within the next month or 2 and be credit card debt free for the first time in a year!!! (I LOATHE credit card debt.)
Speaking of which, does anyone have experience working with a debt consolidation company??? I am having trouble keeping track of the 12 or so outstanding medical balances that we owe and I've missed a few payments here & there. It would be so much easier if we could just make 1 payment every month and have someone else divide it up for us for...but i don't want to pay interest. Is that even possible?? I feel like I am going to be an expert in so many different areas that I didn't have a clue about 8 months ago- lucky me right?!
This has gone on long enough. I'll check back soon to let everyone know when we start chemo again so we can all pray for minimal side effects...it worked last time which is why we're so gung-ho to get at it again and get it over with.
Emily
Thursday, July 19, 2012
Blood work & life as normal
Man, I feel like I am really letting this blog go! There just isn't really anything new to discuss on a day to day basis or even a week to week basis. I did forget to post after Rion went to the doctor last Friday for his blood work- everything was great- better than great actually. His white blood cells are UP from where they were when we were at Duke the day he started his last round of chemo. His platelets are totally fine, above the normal range for a chemo patient. His energy levels are soaring (most of the time) and his appetite is doing well. He still struggles with not being hungry very much but when we make him eats he usually ends up eating a lot. We have notice that Rion eats a lot slower than he used to- no idea what is causing this. He doesn't seem to be eating more just taking more time. Not that there is any problem with it, just an observation.
He starts round 4 next Wednesday and we pray, pray, pray that it goes just as well as this round has. We'll have time to squeeze in 1 more round before we go to Duke next month for the big important appointment to decide if we stop chemo at 6 rounds or continue on with 12. I simply can not even think about that appointment without getting super nervous. I have an obvious love/hate relationship with Duke University Hospital and more specifically the MRI machine(s.)
Things are otherwise going along swimmingly over here. We are definitely settling back into a groove- work, social life, household chores, etc. We bicker and argue occasionally like any other couple and we also cuddle and hug way more than we used to. I still have guilt with taking time to go do something by myself because I want to spend every possible second together, it's like we're newly weds all over again (except for the bickering/arguing LOL) I would say we have done a good job of accepting the diagnosis and moving on. Except for the bald head and handicapped parking tag (that's new as of last week too) you wouldn't know there is anything wrong with Rion. Sure he has his good days and bad, feeling especially tired and very occasionally getting sick, but don't we all? We know it could be so much worse and we are thankful for all of our days together, even the bad ones.
That's all folks!
Emily
P.S For the Harris family members that read, we are planning on coming to the reunion next Saturday along with Andrew!! We are really looking forward to seeing everyone and being able to thank y'all in person for all of the love and support you've shown us.
He starts round 4 next Wednesday and we pray, pray, pray that it goes just as well as this round has. We'll have time to squeeze in 1 more round before we go to Duke next month for the big important appointment to decide if we stop chemo at 6 rounds or continue on with 12. I simply can not even think about that appointment without getting super nervous. I have an obvious love/hate relationship with Duke University Hospital and more specifically the MRI machine(s.)
Things are otherwise going along swimmingly over here. We are definitely settling back into a groove- work, social life, household chores, etc. We bicker and argue occasionally like any other couple and we also cuddle and hug way more than we used to. I still have guilt with taking time to go do something by myself because I want to spend every possible second together, it's like we're newly weds all over again (except for the bickering/arguing LOL) I would say we have done a good job of accepting the diagnosis and moving on. Except for the bald head and handicapped parking tag (that's new as of last week too) you wouldn't know there is anything wrong with Rion. Sure he has his good days and bad, feeling especially tired and very occasionally getting sick, but don't we all? We know it could be so much worse and we are thankful for all of our days together, even the bad ones.
That's all folks!
Emily
P.S For the Harris family members that read, we are planning on coming to the reunion next Saturday along with Andrew!! We are really looking forward to seeing everyone and being able to thank y'all in person for all of the love and support you've shown us.
Thursday, July 5, 2012
1st chemo, higher dosage & update on new medication
Rion's last dose of chemo was Sunday 7/1 & we think he did really well considering the increase in dosage. His 1st blood work is next Friday, July 13th, so we won't know for sure how his blood counts are until then but he is feeling fine the majority of the time. He was only sick 3 times- 2 times Saturday evening/night & Sunday afternoon. I think Saturday was a combination of chemo & being out at the pool all day in the hot, hot sun...it was a looooooong day that would have worn anyone out regardless of whether or not they are taking chemo! Sunday's vomiting was scary because it happened immediately after he had one of his partial seizures. He said he didn't feel any differently and he thinks there isn't a correlation between the two, but as always it made me nervous especially to see the symptoms combined. Sometimes I look at Rion and it just kills me that I can never know exactly how he feels, it must be so scary to never know when you are going to start feeling off and knowing that there is a possibility that it could turn into a full blown seizure. I hope & pray it doesn't because that was such a traumatic experience for both of us before.
Speaking of seizures Rion is doing well tolerating the Vimpat (the adjunct seizure medication that he started last week.) So far no major side effects- just a little dizziness that goes away with a few hours of taking it. He is moving up to 200 mg from 100 mg today so we will watch & make sure nothing changes. Last Sunday was the last time he has had any sort of possible seizure activity and i'm hopeful that it will be the last for good. I'm so glad that God has given us the knowledge to credit these medications which allow us to leave relatively normal lives. Rion is driving & working & over all feeling good even though he has seizures and is undergoing chemotherapy; it wasn't that long ago that both situations would have left a persons body feeling absolutely ravaged and unable to function. I also thank God for allowing Rion to respond so well to, and tolerate, treatment like he does.
That's about all we have going on as of now. I thought I'd share a cute picture of Rion holding my mom's new kitten (appropriately nick named Itty Bitty Kitty;) Rion LOVES animals and it's so darn cute to see him with anything cute & cuddly : )
Speaking of seizures Rion is doing well tolerating the Vimpat (the adjunct seizure medication that he started last week.) So far no major side effects- just a little dizziness that goes away with a few hours of taking it. He is moving up to 200 mg from 100 mg today so we will watch & make sure nothing changes. Last Sunday was the last time he has had any sort of possible seizure activity and i'm hopeful that it will be the last for good. I'm so glad that God has given us the knowledge to credit these medications which allow us to leave relatively normal lives. Rion is driving & working & over all feeling good even though he has seizures and is undergoing chemotherapy; it wasn't that long ago that both situations would have left a persons body feeling absolutely ravaged and unable to function. I also thank God for allowing Rion to respond so well to, and tolerate, treatment like he does.
That's about all we have going on as of now. I thought I'd share a cute picture of Rion holding my mom's new kitten (appropriately nick named Itty Bitty Kitty;) Rion LOVES animals and it's so darn cute to see him with anything cute & cuddly : )
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