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