All.Done.With.Chemo!!!!!

Yay!!!! Rion's last dose of chemo was Tuesday night and Tuesday was by far the worst day. He vomited 2 times (including at the oncologists office which he had to rush to an hour late after we totally forgot about his appointment.) I was very proud of him though because even though he felt horrible he still went out & voted. I posted that little fact on FaceBook to try and "shame" others into voting that might have thought they had a good excuse not to.

Each day is better than the last; he ate a normal lunch & dinner yesterday and even felt like venturing out today. Tomorrow we have plans to go out for dinner for my birthday coming up next week and I was afraid we would have to cancel them. But it looks like we are all systems go!

Rion will continue to have blood work done on Tuesdays for the next 3 weeks at which time his counts should be rebounding and he will be able to stop going. I don't know what we're going to do with all this extra time?!? Not to mention the $25 co-pays we'll save. We thank God for our insurance and our other many blessings but this last year has been a real eye opener for how quickly medical expenses can add up (still haven't paid a dime to the folks at Athens Regional since they won't work with us...maybe they'll just write it off LOL)

Thank you all for continuing to follow along and support us throughout this journey. I am not sure what my posting schedule will look like now that treatment is on hold but I'm sure I'll be back from time to time to give updates. Especially around the next MRI at the end of December and if anything happens before then. I might write a "touchy feely" post around 11/21- the 1 year anniversary of Rion's first seizure- that is sure to be an emotional day for me/us.

Blessings,

Emily

Lots of good news

We are home & settled in from our trip to Duke and we have a lot of good news to share. So here it is:

•  Rion will be able to "take a break" (the neuro-oncologists exact words) from chemo after this last round which he will begin Friday. He will take the chemo for 5 days and get lab work done once a week for 4 weeks and then after that he can stop.
• He will continue to have MRI's every 2 months BUT they will be done locally & the disks sent up to Duke for review. We will not have to go back to Duke for 4 months!!
• His MRI was GREAT- "stable to improving" (same doctors exactly words) with no new areas of enhancement and decreased size of the re-sectioning cavity and fluid around the incision.
• We can expect to see improvements in Rion's memory & attention the longer he is off the chemo. Much of what I had read stated that the neurological side effects of chemo are permanent however the doctor said that with Rion's age she does not expect this to be the case. This is such a relief to us as we both find it frustrating how forgetful Rion is and how easily he is distracted when trying to complete a task. We will discuss these issues again in 4 months and if we are still concerned there is a neuro- psychiatrist Rion can meet with for an assessment and to develop a treatment plan
• And our last bit of good news isn't so much about our Duke trip but rather about life AFTER treatment...

Baby Henderson is due April 28,2013!!!

Ready for Duke next week!

Next Tuesday (10/30/12) we will travel to Duke for Rion's *hopefully last for a while* MRI & neuro-oncologist appointments on the 31st. We are extremely optimistic about this trip- no seizures, his white blood cells & platelets are still doing fabulous & the last few MRI's have been progressively better. This trip feels like the conclusion to the past years worth of doubt, confusion, fear, education, hope & perseverance. We are more than ready to have Rion declared "DONE" with active treatment!

The game plan is for Rion to start his LAST round of chemo next Friday 11/2/12- 5 days on & then ??? off. The idea of not having to go to the doctor each week for blood work & not having to anticipate him being sick for a week out of the month is fabulous. It takes 4 phone alarms just to remember all the medication he has to take on "chemo days;" no more of that!

So please keep us in your prayers next Tuesday & Wednesday as we travel and meet with the doctors. While we want to be done with treatment, we want Rion to be declared healthy & stable more than anything!

Blessings,

Emily

Done with chemo 5/6

Rion is done with chemo as of Tuesday & seems to be doing better. This time the side effects hit harder & stronger- he started getting sick Monday morning & was sick Monday, Tuesday & Wednesday. When he woke up very early this morning feeling ill I convinced him to take a Phenergan which either worked  or just knocked him out for a few more hours so he was too zombie-fied to get sick. Either way, I'll take it! His blood work as of Tuesday was still good (to be expected since he had just started 5 days earlier) and he will continue to go each Tuesday for blood work. In an ideal world his levels will start dropping in 2 weeks but be back up by the end of the month so he can take his last cycle starting November 2nd. In reality I am expecting levels to have trouble coming back up as they have with the last few rounds. Seeing as though the side effects did not decrease in response to the lowered dosage I am thinking the white blood cells & platelets (the 2 levels he has had so much trouble with) will probably suffer as well. Someone pointed out to me that the level of toxins from the chemo in his body have probably built up so much over time that any additional toxins will produce worse side effects than they would have in the beginning when we were starting with a "fresh" body. We are still happy that things haven't been any worse, he has been able to get out of bed every day and spend time with me & the puppy dogs; he has eaten at least some little something each day.

Sick Rion : (

After taking much longer than it should have to get the correct dosage of chemo, Rion finally received it in the mail and started it Friday. Unfortunately the nausea/vomiting & fatigue have hit harder & sooner than before- tonight is the last night of chemo but he has been sick for 2 days now. He went for blood work this morning and everything still looks good (as expected) but we anticipate white blood cells and platelets will start declining within the next week or so. I'm so ready for this to all be over. I'm pretty sure Rion's body is just worn out from fighting this poison and every time it gets harder and harder- this would explain why his levels go down further & stay down longer each time. I know chemo is a good thing- and his body is doing what it needs to do to fight off the cancer cells- but it doesn't make it any easier when he's woken up from a dead sleep to vomit : ( I just wish there was more I could do!

Full speed ahead

Rion's blood counts are finally up enough for us to start his next round of chemo -AND- they are letting us lower his dosage since he has been having such a hard time rebounding after each cycle. YAY ALL AROUND!

While we would ideally like to have him get 2 more rounds of the mega strength dose, we have to consider that it is taking him almost double the amount of time it should between treatments which is not good. So by lowering the dosage we can *hopefully* get both rounds in before we return to Duke at the end of next month (my fear is that if he still has more chemo to do they will make us come back again before we're cleared to officially stop the chemo & have most of his scans done down here until further notice.) I never in a million years thought I would be this excited to have Rion taking chemo but we're to the point that we are so over all of the doctors appointments; he goes once a week for blood work at the local oncologist and to Duke every 2 months- not to mention the countless e-mails & phone calls that are exchanged each week to keep everyone in the loop- and we are always planning our life around chemo weeks...which has been especially difficult since we don't know until the day his blood work is good which weeks will be chemo weeks.

We received some really, really good news yesterday. Every time we have an MRI at Duke they prepare a summary report of the MRI findings, specifically in comparison to his previous MRI. They note why he's having the MRI "30-year-old male status post resection of a left temporal oligo astrocytoma" and then they look at the re sectioning cavity (where the tumor used to be) and the surrounding areas (where new tumor is most likely to develop.) The one from August had 2 pieces of good news: 1) "Decreased conspicuity of nodular enhancement posterior to the resection cavity and decrease in extra axial fluid collection" and 2.) "No new area of enhancement." To my simple mind I take that to mean that the "iffy" spot we saw before is shrinking, there are no new "iffy" spots and he is continuing to heal from surgery. Could we ask for anything better?!? This kind of information just puts my mind at ease that we are on the right path and making the right decisions, although it might not always seem like it. I wish I was more faithful and didn't need this tangible evidence to reassure me but it would be a lie to say I don't. While thanking God for this amazing news I am also asking for Him to increase my faith and take away my doubts & fears that seem to creep up over time.

As always, thank you for all of your continued thoughts and prayers. We've had a good # of people ask us lately if we are going to still be planning some sort of organized benefit or fundraiser and we've officially decided to not move forward with that. There are so many reasons for our decision but the main one being that we feel like we (kinda. sorta. sometimes.) have a handle on things. Our finances are a mess but slowly they are becoming an organized mess (I have still yet to pay a dime to the hospital in Athens from Rion's initial trip there last year when this all started but they are completely unwilling to work with us so they will stay at the back of the line!) Most doctors/hospitals are understanding and willing to set up reasonable payment plans. Additionally we have applied for charity/co-pay assistance/pay-in-full discounts with everyone and been fairly successful at having the bills reduced or in some cases eliminated. I would estimate we still have around $17,000 in unpaid debts but that will still be there when Rion is able to work full time again and we can chip away at them a little more quickly. Something else I've had to accept over the past year is that I simply can not control this situation and I have to learn to react in the most positive, effective way when somethng is thrown at me. I have also taken my organizational skills to a previously unattained level having to keep up with everything! Not to say I don't occasionally let something slip through the cracks : )

Last I want to point out that while Rion looks and feels amazing, there are some parts of him that have been changed indefinitly. We had an appointment last weekend to set up wills & advance directives and we video recorded the session. While Rion was totally fine with that and knew ahead of time, the pressure of being on camera made it really hard for him to think and formulate answers. What we take for granted every time we open our mouths to verbalize a thought doesn't come automatically to Rion any longer and the more stressful the situation, the worse it is.  For example, we noticied almost immediately after surgery that Rion had difficulty saying the blessing before dinner (especially with his eyes closed) and ordering at a restaurant. When he's in the spot light and has something very specific he wants to say is when he has the most trouble. It hurts me to watch him struggle but I'm so proud of him for not getting (too) frustrated and not giving up on himself. He is such an amazingly strong person and I continue to thank God for each and every day we have together because being married to him truly makes me a better person.

Here is a cute picture I snapped of Rion the other day when we were playing around. He decided to put Scooby's halloween costume on his head and tell me the frog was eating his brain. I'm not too sure about all that but I think it's adorable and shows how playful & funny Rion is all the time!

still no chemo

Today is 6 weeks since Rion started his last chemo dosage and after lab work today it's a no-go again for at least another week. His white blood cells are still very low- in fact his neutrophils are lower than they have ever been before.  We have a call into Duke to see if Rion needs to get the booster injection they have discussed with us before. We would also like to lower the chemo dosage so Rion can finish the last 2 dosages in a reasonable amount of time- he has only had 2 dosages in the last 12 weeks with all of the waiting for his levels to come back up. I also can't help but think that it isn't good to keep lowering his white blood cells & platelets to the point that they are not rebounding as they should. But what do I know, I'm just the paranoid wife right?!?

So...nothing really new to report but I'll post another update when we hear back from Duke or after lab work next week.

Emily

Duke appointment 8/29/12

First of all THANK YOU to everyone for the prayers and well wishes today. We have truly felt your presence and it has given us strength to get through these past 2 days.

The appointment today was very good, better than we could have imagined. Yes, Rion is definitely having the partial sensory seizures again but it's not due to any of the causes we had speculated about. No swelling, no scar tissue, no tumor- the MRI was "stable" with no sign of change!! So...what is causing the seizures?? STRESS! Crazy, huh? But yeah, once you have a seizure you are per-disposed to having them again- they can be brought on by things as simple as lack of sleep, dehydration (which we are thinking played a part in Rion's most recent bout) as well as stress. Things have been pretty up & down these past few weeks and while Rion is a very laid back guy, his brain apparently didn't get the memo. But we thank God it wasn't any of the physical conditions that we has suspected. We are going to start searching for a psychologist that Rion can meet with to teach him some stress management skills as well as give him a non-biased sounding board to work through any stresses he wants help with. Along with therapy, it will be up to us (all of us) to make sure that we don't put too many expectations on him since feeling like he isn't "good enough" or "doing enough" seems to be a recurring theme. Rion is not the same person he was 9 months ago- he is not lazier or doesn't care as much, but doing even simple things takes so much out of him now because of the extra concentration and focus it takes. He just isn't able to take on as much as he could before and its hard to pick and choose when he wants to still go at the same (warped) speed as he always had.

The 2nd part of today's appointment was focused on how we are going to manage the new seizures. The increase in his Keppra to 3000 mg/day is working but the side effects are unacceptable. The fatigue & mental fog are not lifting as well as a general "off" feeling and an even harder time organizing and discussing his thoughts. So starting tomorrow we will begin gradually increasing his Vimpat, the adjunct seizure medication that was added in June and had successfully stopped all seizure activity until these break through seizures last week. Once that medication has been increased to 400 mg/day (is currently 200mg) then we will start weaning him back down on the Keppra to the 2000 mg/day he was on up until this past Saturday. The neuro-oncologist on call did not make a mistake by increasing his Keppra, Keppra is an amazing drug that has relatively few side effects and virtually no known drug interactions. The Vimpat on the other hand is a newer drug that isn't as well tolerated. But in our situation we feel that increasing the Vimpat is in Rion's best interest along with lowering the Keppra. It will take about 2 months total to make these changes to his medication which puts us right at our next appointment in October 31st where we will discuss with the doctor again how Rion is doing and make any additional changes as needed.

The last bit of (good) news- Rion should be all DONE with chemo in 2 months!! The oncologist said again today that he is doing as good as we could expect and there is no reason to continue on with treatment after he gets this 6 months under his belt. There is a chance that we might have to lower the dosage of the final two rounds because his platelets were down today lower than ever (52,000 & the previous record low was 60,000.) If they go below 20,000 Rion will possibly need a platelet infusion and will not be allowed to continue on the current chemo dosage. Additionally we need to watch his white blood cells and if they get below 1,000 (current low is 1700) then he will have to get a shot to boost his white blood cell production. Because of the compromised immune system (did not get the exact white blood cell # today but it's down from 2000 where it was last week) he is at a risk of a flair up of his shingles again so for now he will stay on the Acyclovir- the antiviral medication that he has been taking since the shingles started. We will also decide at our next appointment when he can stop taking that but it isn't harming anything and the complications from another shingles outbreak could be really bad.

So that's where we are now. To say we are relieved would be an understatement, Rion smiled today for the first time in a week and I am reminded again how wonderful and kind our God is if we remain faithful to him.

Emily

At Duke & return of partial seizures

What a crazy few days we've had. Rion had his blood work done last Tuesday and it was OK, down a little but that is to be expected. I didn't blog about it because it was pretty uneventful and I knew I'd be blogging this week about our trip to Duke.

Rion was doing really good until last Thursday when he started having partial seizures after 6 weeks of not having any. He didn't say anything to me about it until Friday when I got home from work because he was hoping they would stop. By then they were happening pretty frequently, every couple of hours. He took a good amount of his as needed seizure medication and was able to sleep soundly until 5 am Saturday morning. He was woken up by a seizure and within 45 minutes he had 3 of them. I couldn't just watch it happen any more so I called our local oncologist (following the instructions from Duke, we call the local doctors first with any problems and then call Duke if they are unable to help us.) The on call doctor was nice but he admitted he isn't a brain specialist and recommended we call our neurologist. Well we don't see them very much so I just skipped that step and called the neuro-oncologist on call at Duke. The good news is we got the seizures to stop, the bad new is that meant increasing his Keppra from 2000 mg/day to 3000 mg/day which is the maximum dosage. He started the higher dosage Saturday morning and only had a few seizures all day, by Sunday they had stopped completely. Unfortunately the side effects from increasing the Keppra are pretty severe. Rion is extremely fatigued, he is taking at least 1 nap a day and then sleeping at least 10 hours a night. The fatigue should subside over time but the mental side effects are what scares me. Rion has always been very positive & optimistic throughout this entire journey but I see his faith wavering now. Whether it be from the increase in Keppra or the seizures themselves, Rion describes the way he feels as "going crazy" or being "unable to collect his thoughts." It is slowly wearing him down and it worries me. While understandably apprehensive about tomorrow I am also so relived we don't have to wait any longer to get some answers about what is going on. Honestly if we hadn't had this trip planned already I would have brought him up here any ways. Something is definitely going on and the sooner we can get some answers the better.

So...the big question is: what happened to start causing these seizures? From my research I have come up with 3 plausible answers. First, and most UNlikely is that the tumor is already coming back. The neuro-oncologist I spoke with Saturday all but ruled that out since the MRI 2 months ago was clear. It is almost impossible for the tumor to come back that quickly & while actively taking chemo. My second theory is scar tissue from surgery has formed around the resectioning cavity. I am not sure what course of treatment would be taken to correct this problem but I couldn't imagine much could be done. My last theory is that Rion's brain has started to swell from the radiation treatment and the swelling is causing inter cranial pressure leading to seizures. As sick as it sounds this is what I hope will be the diagnosis. I am pretty sure they can prescribe steroids to reduce the inflammation and then back his Keppra back down. Of course those are just my thoughts and it could be something totally different. Either way, I just pray its something we can treat rather than just treating the symptoms.

So that brings us up to the present. We are sitting in a hotel room in Durham trying to relax enough to sleep tonight (something I have really been struggling with.) We will be at the hospital at 7:30 to start blood work & then on to MRI at 8:30 and the oncologist appointment at 10:30. Please pray for our nerves and the grace to accept whatever the diagnosis may be. I will try to update the blog as soon as I can. If you are on Facebook, feel free to send me a friend request as I often mention things on there before I have time to blog.

God bless!!!

Emily

Sorry to be so neglectful!

Is neglectful even a word?

Anyway, we have just been really crazy busy and I haven't updated the blog in a loooooooong time.

Rion took his 4th round of chemo last week- Tuesday thru Saturday. He did ok while on the chemo but Sunday night it hit him really hard. He got confused and didn't take his anti-nausea medication after Sunday morning and once it was out of his system he was defenseless to the nausea/vomiting. It continued on into Monday and wasn't really until Tuesday that he started feeling better again and able to keep food/liquids down. I was really concerned about him Monday because he couldn't even keep water down and he got really fatigued being so ill. But after sleeping well Monday night he was in much better spirits (and hungry) Tuesday morning. Things have continued to improve steadily every day.

We are happy to report his shingles are all but cleared up! It looks like he might have some scarring that will hopefully fade over time. He is still taking the antiviral medication 2 times a day until we go up to Duke and they re-evaluate him.

Speaking of Duke, we are still on for our appointments on the 29th so we will travel up on the 28th as we normally do the day before. Please pray that Rion is able to get our Expedition fixed before then so we won't have to make the long drive cramped in my little car. Yes the gas mileage is much better in my car but both of us are more comfortable in the Expedition (and Rion has enjoyed napping just about ever trip up there!) We are anxious to get the MRI done and confirm that the chemo is working and the iffy spot continues to remain unimportant, or better yet, is shrinking. We are also hopeful that Duke will clear us to stop chemo after 6 months...that would only mean 2 to go!!

Next Tuesday is Rion's first blood work post chemo and we don't expect to see many if any changes. It seems like it takes closer to 3 or 4 weeks for his levels to start dropping. Maybe this time they won't though and he'll be able to take his next dosage on time in 4 weeks. He is ready to hurry up and get it over with, even if it means being sick as a dog for a few days. He had mentioned having Duke lower the dosage down after becoming so ill this time but I really think that if we stay on top of the anti-nausea medication he won't have to go through anything near as traumatic again.

God bless you all and thank you for the continued prayers!!

Emily & Rion

Going backwards?

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

Shingles

Guess where we got to spend our Sunday?!?!

The emergency room!!!

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

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

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.

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 : )

Recap from Duke

I know that I should have posted earlier but there was A LOT of information thrown at us this week and every time I tried to start this post I would get overwhelmed with everything I wanted to share and how much I wanted to share. So...here's what I've got for now and I might add onto this post as we think about things more and make any subsequent decisions.

1.) The overall tone of the meeting was positive and encouraging. The MRI was categorized again as "stable to improving." There is nothing new since April & the area around the resectioning cavity that was highlighed before continues to shrink. Unfortunately there is something on the MRI that shouldn't be there- they don't know what it is and it's too small to remove or biopsy. This is actually the MRI from April but the one from June was so similar I couldn't tell which was which (also I forgot to get a copy of the one from June so this will have to do.) I know this looks tiny and it is small but there is another angle that shows it better and it looks like a miniture version of Morton. It could be swelling from radiation/surgery still, it could be scar tissue, it could be tumor, we don't know we just have to watch it and hope it doesn't get any bigger.

2.) The doctors confirmed that Rion is still having seizures- the "clicking" he hears in his head and the episodes that we have been calling panic attacks (Rion describes it as his thoughts racing, his heart speeding up & smelling a distinct smell of something that isn't really there) are both partial seizures. They have put him on Vimpat in addition to his Keppra to try & stop these seizures. Similar to the Keppra it is a fairly strong medication and has to be gradually increased and can not be stopped abruptly. The side effects are similar- fatigue, dizziness, nausea & suicidal behavior but since Rion has tolerated the Keppra so well we assume this will work just fine. In case you are wondering (as I was) why not just increase his Keppra, we were told that the next higher dosage (3000 mg/day) is likely to cause debilitation fatigue and clearly we don't want that. So we will try the new medication and hopefully get the seizures to totally stop. Rion wasn't told to quit driving but I still worry about him driving, especially if he has a "clicking seizure" because he has a really hard time concentrating on anything else when that happens. Luckily this hasn't happened yet and maybe it never will!

3.) His blood work was good enough to go ahead and start the round of chemo he missed a few weeks ago. He started Wednesday & so far so good. They added a 3rd medication for nausea/vomiting to try & prevent any of the spontaneous vomiting episodes Rion has experienced with the last 2 treatments. He is taking the higher dosage of chemo (375 mg vs 280 mg.)

I know I have mentioned here before that Rion would be on this chemo regiment (5 days on/23 days off) for a total of 12 cycles (12 months) but we are going to possibly change that to only 6 months- 4 more cycles including this one. I have mixed feelings about this- it would be wonderful to have Rion done sooner especially since he had been feeling so good with the extra 10 day off chemo. I can honestly say he has been acting more like himself the past few weeks than he has since his initial seizure last November. He is happy & active & just so full of life- I know it will be great when he is DONE with chemo and able to really resume life without trying to plan it around certain times of the month when he is more likely to be sick. But on the other hand I hate to feel like we aren't doing anything to prevent recurrence. The doctors assured me that there is no hard evidence to support that 1 year of chemo is any better than 6 months with the type of tumor that Rion has. In brain tumor talk there is a lot of emphasis on chromosomes 1P & 19Q- there is an inverse relationship between having these chromosomes & response to chemotherapy treatment ie if you don't have these chromosomes the chemo is more likely to be effective than if you do have them. This week we learned that in Rion's case he has a partial loss. Also, his tumor is composed of 2 different types of cells- one of which tends to respond more favorably to treatment than the other. Wikipedia has some good basic information- read here.

Our game plan for now is to get a fewmonths under out belt of the higher dosage chemo & go back to Duke at the end of August for another MRI & decide if we are going to finish chemo at 6 months or 12. I am already nervous about that trip because so much is riding on it! In the mean time we are going to have lab work done weekly instead of towards the end of each chemo cycle to stay on top of Rion's white blood cell count & platelets since we have seen them adversly affected at lower doses of chemo. If white blood cells get too low there is an injection they can give him to boost production of white blood cells & get them back up to a safe level. If his platelets get too low then he will have to get a blood transfusion to bring them back up. Even with the lowest his white blood cells & platelets have gone, they have never been to these dangerous levels before so we are praying they don't drop too much. But at least if they do we have a solution that we are both comfortable with.

That's all I got for y'all today. We walked away from the appointment feeling pretty good- I tend to focus on the negative but I'm really trying to just follow the doctors advice and live life "as normally as possible and not let this impact and decisions about our lives or our future."

Blessings,

Emily

Upcoming Duke appointment

Tomorrow we will travel to Duke for our appointments on Wednesday for blood work, MRI & meeting with our new oncologist there (the one we had been assigned to recently retired however we had never actually met him- long story for another time.) To say we are nervous right now would be an understatement. I feel like there is so much riding on this appointment- the Duke people said last time we wouldn't have to come back if the MRI was clear again (Dear God PLEASE let it be clear) but at the same time I'm not 100% confident in our local oncologist due to the decision to start chemo last time when Rion's white blood cells were so low. I'm not sure I want to give up our 2 month follow up with Duke when I feel like they are way better qualified to manage our case. That, along with many, many other things, will be brought up this week when we're there. Some of these things I'm not sure if I want to know the answer to but not knowing is starting to wear me out and make me imagine worse case scenario type stuff.

I have so much anxiety right now i feel like I am literally crawling out of my skin. I just want to get there & get it over with and be on our way home with good news and all of our questions answered. I can't imagine living the rest of our lives like this but I assume it will get easier over time. This is still a relatively new life style for us- last Thursday was exactly 7 months since Rion's seizure- but at the same time I feel like we're been dealing with this forever.  I would dare to say we are in a transition period now where the newness of the diagnosis is wearing off and we're slowing starting to shift our focus & energy from cancer back to the "normal" every day things that we deal with. For instance, I am working on trying to refinance our house, something I've been wanting to do since B.M (before Morton) but I always felt too overwhelmed to do. Not to say that things have calmed down by any mean I just think I am learning some coping skills that are helping me prioritize and let the little things go (such as that nagging $14,000 hospital bill from last November that it will take us years to pay off!)

So please pray for us these next few days. Tomorrow will be a long day being in the car and being anxious and then Wednesday is just going to be a plain old long day since we have to be at the hospital at 6:45 AM for our 1st appointment and then drive home after our last appointment at 9:30 AM.

Please God give us good news, I'm so scared to even think what it will do to our spirits if we get bad news.

Emily

Duke halted the chemo

I know I left things up in the air last time and for everyone (all 4 of you what read that post) that was wondering Duke did call Rion back Friday and told him NOT to take the chemo. The do not want his white blood cells to go below 2.5 so we will wait until our blood work in North Carolina on the 27th to decide when he'll take it next.

I have such  mixed feelings about this! I was actually surprised that the doctors said not to take the chemo, I thought I was being overly cautious and was really just seeking validation more than anything from Duke. It's also weird that we have been planning for this for the past few weeks and anyone that knows me knows that I don't like a disruption in plans. But more than that, I hate feeling like we aren't doing anything to fight Morton and keep him from coming back. Deep down I understand that a week or two isn't going to really matter but I can't help but feel apprehensive. If/when Morton comes back are we going to regret not following the local doctor's orders? This is something I want to address at Duke, once again for validation, that it's ok for us to contact them if we are told something here that we aren't sure of.

That's it, short and sweet. Needless to say Rion isn't complaining : )

Emily

Starting chemo tomorrow? maybe...

This may get long so bear with me.

Rion is to start his new, higher dosage of chemo tomorrow and he had his final blood work done this morning at the medical oncologists office. His platelets are still doing fine (the one count that we have struggled with) but now his white blood cells have decided to creep down lower than they have ever been before. Going on the print out given to us by the doctor, the lowest number on the range of "normal levels" (for people who are not on chemo) is 4.8- I am not even going to pretend if I know what that means (parts per million, parts squared, etc) but I do know that his white blood cells are at 2.3 and basic math tells me that is less than HALF of the minimum. It is also interesting to note that previously his lowest # was 2.9 and that was just last week so it would appear they are trending down. My usually logical brain tells me then that it is NOT a good idea to start taking MORE of the medication that lowers the white blood cells...at least not tomorrow when we aren't sure if 2.3 is where they are going to stay or if they are going to go even lower! The doctor felt it was of some concern because Rion was given a prescription for an antibiotic and instructed to start taking his temperature periodically; if it's over 100.5 Rion is to start the antibiotic. Once again, logical brain tells me that by the time you have a fever then you already have an infection and you are then being reactive instead of proactive. Why not wait to start the chemo until the levels are back up? Will waiting another week really make a big difference in the grand scheme of things? Why not start taking the antibiotic now as a preventative measure?

I struggled for a minute with deciding whether or not to call our oncologist at Duke and see if they concur with the decisions our local oncologist made this morning. Does it make me seem like a Nervous Nellie second guessing the local medical oncologist? But at the same time, we did learn last time we were at Duke that the local doctor had Rion taking an antibiotic that A.) he didn't need and B.) was suppressing his platelets (the whole reason they wouldn't come back up before.) So I kinda feel that it's ok for us to verify with Duke that they are making the right decisions. Rion left a message for our oncologist nurse this morning and is waiting to hear back from her. Often she can be hard to get a hold of so hopefully we get lucky & she calls us back today. Honestly I am not sure what we are going to do if she doesn't. I'm leaning towards waiting until Monday evening (only 2 days behind schedule) to take the new chemo with the hope that Duke will call us back by then.

Why do I feel like there is ALWAYS something coming up out of the ordinary that has to be addressed? I guess that is the name of the game, I mean, Rion does have cancer and that normally isn't a walk in the park. (BTW, it is still hard for me to say he has cancer, it breaks my heart a little bit more each time I say it.) But once we get things under control something new pops up that we have to scramble to fix and honestly I'm not always happy with the fixes.

For example, he brought up this morning that he is still having the partial sensory seizures that I mentioned in my last post. The doctors answer was to prescribe Ativan to take as needed to stop the seizure. There are so many problems with that! First, they don't last more than a few minutes at the most so he wouldn't really have time to take anything to stop it. Second, instead of taking a pill to stop the seizure (reactive) why not increase his Keppra to stop them from happening in the first place (proactive?) I know from doing my own research that more than likely seizure activity will be our first warning that Morton is coming back- if we never stop these partial seizures we might miss out on a very important warning sign in the future. He is not taking any where near the maximum dosage of Keppra and is having virtually no side effects so I don't see why we couldn't try that.

I am not a doctor and I definitely defer to their judgement, I guess I just want more of an explanation as to why they make the decisions they make instead of just saying 'ok' when I don't understand the reasoning behind it. I really, really wish I could go to these appointments with Rion- it is so hard for him to think up these questions spur of the moment like I do and even harder for him to relay EVERYTHING back to me. We had him totally prepared this morning to address the things that have come up recently- he had a list as well as some information on the seizures I had printed out online. But it's the follow up concerns that we can't prepare for that make me want to be there. I end up getting frustrated with Rion when I know it's not his fault and he is doing the best he can. (And please don't think I'm implying that Rion is "slow" or "stupid," we have very different personalities without involving chemo brain that leads me to ask more questions and be more inquisitive than he is.)

So that's where we are, waiting on a call back from the Duke oncologist nurse and unsure what we are going to do about taking the chemo tomorrow. We probably will take it either way since in the end, low white blood cells only mean Rion is more susceptible to infection...and we'll just forget about the fact that he will be at Duke in the hospital (AROUND A BUNCH OF SICK PEOPLE) in 10-11 days. We'll be diligent about taking his temperature and he already filled the antibiotic to have at the ready.

And about the seizures, we'll be discussing that at Duke on the 27th & at the next neurologist appointment on July 6th.

It really could be much worse, I know it could, but I'm still stressed out having to take on so much and keep up with all of this. Cancer sucks man, I don't wish this on anyone!

Good results

Rion had a great doctor's appointment yesterday- his blood work is perfect and except for his weight being down nothing much has really changed. He is almost 10 pounds below his starting weight back in March- not too drastic but he feels small when I hug him. With his weight loss & my gains, I'm catching up to him...I do NOT like that idea at all LOL

We are all set to start our next round of chemo in two weeks on June 16th; they will be increasing his dosage again. I am not sure of the exact dosage (I was not at the appointment Tuesday and Rion doesn't ask a million questions like I do) but he was currently on a 25% reduction at 280 mg...I am far too lazy to do the math but it isn't a huge increase. If we can just keep the vomiting under control and keep him eating even when nothing sounds good then we'll be ok. I can't believe we have almost completed a quarter of the year on chemo; it's going by much faster than I anticipated, thank goodness!

The only teeny tiny concern I have is that I think Rion is still having partial seizures- sensory partial seizures to be exact. Here is a link where you can read more about it. Rion is still hearing the "clicking" sporadically that started after his first seizure back in November. He describes it as sounding like the light cord on a celling fan hitting up against the base of the fan- a constant click, click, click that is very loud & distracting. The first few times it happened he actually went around the house trying to figure out which fan was causing the noise. We attributed it to a side effect of his anti-seizure medication since one of the side effects is auditory hallucinations but it has persisted for over 6 months now. He says it is so loud that he can't really concentrate on anything else when it happens and we usually shut off the TV/radio & just sit quietly until it passes. I happened to be watching his face one night last week as the clicking started and his face went blank, similar to what happened when he had the seizure in November except it wasn't as bad. I could tell IMMEDIATELY when the clicking stopped by his facial expressions, before he even told me it was over I asked him. So we're going to be bringing that up next Friday when Rion goes back to the oncologist for his final blood work before restarting chemo.

I started this blog yesterday and had written all of it up to this point. Rion brought something up for the 1st time last night that we are now also going to address with the doctors; he is having what we only know to call panic attacks again. They last a few minutes and he describes it as his heart & thoughts racing and he has to take deep breaths and really focus on relaxing to get it to stop. They don't last long enough to take any anti-anxiety medication but they are disturbing enough that he has started marking them on the calendar to keep track of. I am thinking maybe they need to increase his Celexa dosage which he takes everyday for depression & anxiety but we'll see what the doctor has to say.

I'm sharing all of this because I want everyone to remember that what they see on the outside isn't necessarily a true representation of how Rion is really feeling and that there is usually more going on that you can't see. I can tell that he tries so hard to act "normal" but he is still recovering from MAJOR surgery and taking a fairly high dosage of chemo. Not to mention the 6 weeks of radiation that caused him to lose most of his hair and zapped whatever energy he was able to salvage after surgery.  I feel like I am always the "Debbie Downer" excusing us out of doing things that we normally would have jumped at the chance to do before. It doesn't help that Rion still likes to say yes to everything we're invited to do but in the end often ends up over tired or stressed and then sleeping excessively to catch up. I'm the voice of reason and he's the fun one basically :)

So...pretty good news all around and we look forward to getting some answers to our newest questions. If it seems like there is ALWAYS something new popping up, yup, that's how it feels to us too! But we recognize and appreciate how blessed we are for every day we get together even if some days are more of a struggle than others.

Blessings,

Emily

Odds and Ends

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

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

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? 

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

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!

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

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

Done with round 1

Last night was Rion's last night of chemo for the 1st (of 12) cycles and it couldn't have come fast enough. The double dosage of chemo definitely has hit him harder than it did before when he was taking the single dose (duh) and undergoing radiation. The fatigue has been almost debilitating at times and it's all Rion can do to listen and follow along in a conversation with me. He is cold all the time- his hands and feet are FREEZING even when it's 80F outside. He looks pale and his eyes are red around the rims. For the first time he truly looks like a cancer patient and it breaks my heart! Last night was the 2nd time he has vomited during or immediately after a meal with zero nausea or warning. One minute he's fine and carrying on conversation while we eat at the table and the next second he's rushing to the bathroom. Each time he has been violently ill to the point that he is shaking and sweating afterwards. We have no clue how to combat this but if it continues to happen when he is off the chemo we will be contacting our oncologist at Duke. Another new side effect he has experienced is a low grade fever in the evenings right before bed time. But it's possible that the fever was caused by him taking a bath and raising his core body temperature. We have been taking his temperature periodically throughout the day and so far he hasn't run a fever at any other time. We are anxiously awaiting his blood work on May 9th to see what this dosage has done to his levels, especially his platelets since they suffered before.

But even with all of this we know that we are blessed beyond measure. Comparing his new MRI (wow, can't believe that was just last week, it seems like so much longer) with the original diagnostic MRI from November reminds us that we were fortunate his tumor was operable and, through the work of God, we were about to get in touch with Duke and arguably the best neurosurgeon in the world. We've come across so many people that are living with inoperable brain tumors or whose surgery wasn't as successful as Rion's, these other brain tumor patients aren't as lucky as us and we always try to keep that in the front of our minds when something goes wrong. Our heart aches for each and every cancer patient who has it worse than us and at times we feel guilty complaining about side effects when it could be so very much worse. I couldn't imagine how horrible it would be if Rion still had to continue working right now, he can barely stay up for more than 5 or 6 hours these days and just doing house work leaves him worn out. I'm confident his treatment wouldn't be going as well if he had to manage the stress and demands of a job on top of his treatment & side effects. WE ARE BLESSED!

So things aren't exactly what we would like for them to be but we are constantly humbled by what others have to go through in their treatment. I am hoping that Rion's side effects will subside now that he isn't taking the chemo each day and that his quality of life will improve some what.

Thank you for your continued prayers and support, it blows my mind that we are still getting get well soon cards and donations in the mail almost every day. It makes me want to fight even harder and do even more to keep on top of all of this and take as much stress off Rion as possible- you guys make me feel empowered and I can't accurately express my gratitude and the extent to which I rely on this to keep going.

God Bless,

Emily & Rion

a good learning experience

If you're friends with me on Facebook you might have seen my post yesterday morning that Rion wasn't doing so well and we needed prayers for mental & physical strength...I am very happy and relieved to report today that he is doing much, much better. Praise God!

Yesterday was by far the worst day we've had since starting treatment but it was also a good learning experience for us. It's hard sometimes to remember that Rion has limitations even though he may look and act "normal." We are constantly having to re-adjust and re-think our priorities and how we are going to manage our lives for the next year+ while Rion is on treatment. Unfortunately we made a simple mistake of over doing it which left Rion totally zapped of energy which in turn made him more susceptible to the side effects from starting his new chemotherapy dosage on Saturday night. Last week would have been a bear for anyone- going up to Duke an back in 36 hours (725 miles round trip,) going to a cook out Friday night and staying out later than usual, and then staying busy all day Saturday and once again staying out later than we normally do Saturday night. On top of all of that, it stormed at our house Saturday night and neither or us were able to get any quality sleep throughout the entire night. When my alarm went off Sunday morning (we were heading out of down for the day to visit family) Rion's body pretty much said "no way jose!" He was so weak he could barely get up to walk across the house and all he wanted to eat was a smoothie because it was bland and easy to eat. He slept the majority of the day yesterday waking up only to eat 1/2 a bowl of soup for lunch and the other 1/2 a few hours later. He did get up for about 3 hours yesterday evening and ate a really good dinner but was ready to go back to bed almost immediately. He slept soundly last night and woke up this morning looking and acting much more like his old self!

From the looks of it the fatigue is going to be even worse with this regiment than it was during chemo/radiation. I can't describe exactly how debilitating it is because I can't honestly grasp it 100% myself. But I can say that Rion looks and acts like a totally different person when he's feeling so poorly- he moves & talks slower and it's clear that even thinking takes more out of him than it normally would. This is very hard for me to watch, helplessly, because for the last 7 years I've gotten accustomed to Rion's quick thinking, always on the go personality that often made me feel lazy for my lack of energy in comparison to him. (and if you know me, you know I am NOT a very lazy person LOL) It is just in our nature to stay busy all the time and try to pack the most into each and every day. But that has to stop, he (we) have got to learn how to say "no" more and realize that he (we) are not the same as he (we) were even 6 months ago. To us it feels unnatural, we have always packed our evenings and weekends with as much activity as possible because that's what makes us happiest. Or it was what made us happiest. Yesterday's hang over from all of the fun & activity over the last week was a not-so-subtle reminder of this. With all the extra stress I'm having to deal with right now it's clear to me that I also need to start taking more time to just relax and re-group. I have so many balls in the air as it is, I'm starting to feel like I'm going to have a break down if I don't quit taking on so much. It's just hard, because we're having to say no to things we want to do just so we can manage the things that we HAVE to do. But I guess it's just another component of cancer treatment that no one thought to enlighten us about up front- the constant struggle to return to normal but to be ever mindful that normal isn't what it used to be.

Thank you all for your thoughts and prayers yesterday and thank you for your understanding that when we say no to an invitation that it's nothing personal but we're going to have to start being a little more selfish with our time. After the next year is over we'll have the rest of our lives to go and do and see but for now we need to focus on Rion and getting him through this 12 months with as little pain (physically and mentally) as possible. We would also both ask that you respect our decisions that we make in regards to Rion's treatment and what WE think is best for him. We understand that not everyone would choose to do the things we are doing and we were probably just as judgemental and skeptical as anyone before this happened to us. But it hurts, more than anyone knows, when our friends and family question our decisions and imply that we are not doing what is best for Rion. Please keep these opinions to yourself: it is not going to change our minds and will only place more stress on us. We don't make any decisions lightly but through prayer and the advise of our medical teams we are confident that we are doing everything we need to be doing at this time.


God bless,

Emily

Duke appointment Tuesday 4/20/12

From this (November 2011):

To This (February 2012)

To this (April 2012)

And this (November 2011)

To this (April 2012)

All visible signs of Morton/cancer are G-O-N-E! The doctor's are very excited to see such amazing progress from the post op MRI to this one...any iffy spots are now gone and the only abnormal stuff on the MRI is swelling/inflammation from the radiation and small amounts of fluid left over from surgery. The re-sectioning cavity is slowing closing up as Rion's brain relaxes back into it's original position. We prayed for good results and God gave us more than we even knew to ask for.

In a nut shell the 6 weeks of chemo and radiation was a success, Rion is healing still from surgery and almost all of the fluid that was present on his skull right after surgery has been reabsorbed. Since he did so well on the chemo/radiation regiment, the doctors are optimistic that the next round of chemo will go smoothly and we won't have to keep going back to Duke so frequently!! YAY

Here are the nitty gritty details of what's to come:

• the next chemo regiment will be with the same oral chemo drug that he was just taking in combination with the radiation but it will be at a much higher dosage (double to start off with until we make sure his platelets can handle it and then it will probably be increased further.)
• Speaking of platelets- his have rebounded nicely! We had labs done before we left Duke on Wednesday and they called us later that day to say his levels are all great- platelets are at 135 now so he is all set to start chemo ASAP
• We will be starting the chemo this Saturday evening- on the new regiment he will take the oral chemo for 5 days and then stop for 23 days. We will have lab work done on the 3rd & 4th week to make sure his levels are high enough to start the regiment again the following week 
• Our next appointment back at Duke is June 27th and as long as the MRI is clear and he is tolerating the chemo then we won't have to go back "for a while." (Not sure exactly how long that is but sounds promising to me.) We will still have to have MRIs done periodically but we will just send the scans up to Duke to review & keep in Rion's file

We are so hopeful and excited that Rion is doing so well and really putting up a fight. And we have an amazing team of doctors both local and at Duke that are doing a phenomenal job at handling the medical and human aspect of his cancer treatment. And we really, really couldn't imagine having to face something like this without our loving & understanding friends and families- from the random cards we still get in the mail to the patience you have with us when we have to cancel plans (or always seem too busy to even make plans) we sincerely thank you from the bottoms of our hearts. You guys take so much stress off of us and keep our spirits up when we start to feel discouraged.

God has renewed our hope and we continue to be faithful that He will see us through this difficult time. We look forward to Saturday and actively participating in treatment again which brings us one step closer to remission!

God bless,

Emily & Rion