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Wednesday, August 15, 2012

The Mutt

This week is even more full of doctor's appointments than I could have anticipated. Its only Wednesday morning, but we are already due for a recap.
Monday, we saw Dr. Geoffroy (pronounced "Jeff-wa"). Very french sounding isn't it? Dr. Francois Geoffroy. I love the sound of it and I love him even more. He is very good. We have only seen him twice but he is very knowledgeable, which appeases Brian, and equally personable, which is a huge perk for me. As I may have mentioned before, he has just gotten back from a brain tumor fellowship at Duke. He is on top of all of the various studies, and clinical trials both here and abroad. After each of my questions, he always cites some recent German or Italian finding which gives me hope that SO much research is being done all over for brain cancer.

This also helps to quell some of my overwhelming anxiety over the fact that a lot of times your answer with brain tumors is "we aren't sure." I have heard that answer so many times it makes me sick.
Monday, Dr. Geoffroy came into the room with his confident, cheerful demeanor and got straight down to business. He was working on getting a copy of the chromosome analysis from Mayo and I didn't even have to ask about it, he opened with it. How nice to have a doctor who follows through on his own!

One of the first things he said to us was, "well, Brian, you are a MUTT!" and then he went on to explain.

Here are the complicated and confusing genetic bits. I have discussed the 1p19q co-deletion here before. Generally, people who have tumors where chromosomes 1p and 19q are both gone (deleted by a specific genetic mutation in the tumor cells) respond better to chemotherapy than people who are 1p19q intact. More often than not, 1p19q stick together, from what I have read and understand. That is why its called a co-deletion.

Brian's tumor cells are 1p intact, and 19q deleted. And something about 1p being 1.2% meaning he actually has extra of that chromosome. I of course asked how common this was and Dr. said he had seen it "a couple times." Great. Another rare aspect of a rare tumor that is rare in someone like Brian. I really wonder if we should start playing the lottery.

Unfortunately, 1p is the chromosome that really contributes to the cancer's resistance to chemotherapy drugs. Like the ones Brian has been on for five months.
Forgive my repeating of some info from previous posts, but the further on we go, the more I learn and I can see that I have made some mistakes with information due to either misunderstanding, or misinformation up until now, so instead of editing old posts, I will just recap what we know thus far with correct info (as far as I understand it today).

Brian's Oligoastrocytoma grade III is a mixed cell tumor. Dr. Geoffroy was good to explain how pure astrocytomas behave versus pure Oligodendrogliomas to help explain to us why he recommends the plan of care that he does for us.
Pure grade III astros like to come back faster and evolve into grade IV glioblastomas sooner than pure oligos. An astro prognosis can be as little as two to three years, whereas someone with a regular old grade III oligo can be stable for as long as 10 years. What do you think my next question was?

How long until Brian's Mutt cancer gets bad again then? 

Since Brian has a mixed tumor, there is no way of knowing if it will behave like an astro or an oligo, but generally speaking, his cancer will most likely show up again somewhere in between the two, in the 5 to 7 year range. Which is better than 2-3, but not what I ever want to hear.

Because of the genetic markers, and the uncertainty over how this particular tumor will behave, we were then re-referred back to the radiation oncologist. They got Brian in yesterday, which was nice, but I always get nervous when they move so quickly. Like when he had brain surgery two days after his seizure, I knew how serious it was.

My frustration is, as always, with the uncertainty of everything. Not only the kind of tumor Brian has and the genetic make up of it which seems so rare, but with some of the reasoning behind these medical decisions. We were set up with the radiation oncologist in March, but the first medical oncologist we saw cancelled the appointment saying we should just try chemo and save radiation for later since we will only be able to use it once. Now I am left to wonder if the five months of expensive, toxic chemotherapy was even worth it, or if that is time and money wasted.

Anyway, Brian saw the brain surgeon for the first time since surgery day, yesterday. We have had so much trouble with that office and I was very wary of going to that appointment, but everyone was polite, and seeing the surgeon instead of the nurse practitioner yielded some more accurate information. His six month MRI looked good which was a huge relief!  Brian was sent home with his release to work in hand since no one there seems to know how to operate a fax machine, and set up with an appointment again, for three months. Dr. Geoffroy said we didn't really even have to see neurosurgery again, that he could just order MRI's from now on because he always wants to see it for himself anyway. I was thrilled about that, but the neurosurgeon said that sometimes, with all of the patients they see, if they just get a report from an MRI sent over it gets lost in the shuffle. (How refreshingly honest! That office is a mess!) And that if we have an appointment, they have  to look at the results. He explained that this is a triple check of sorts for Brian. He will see it, Dr. Geoffroy will see it, and the radiation oncologist will see it. Then all of the doctors, in their specialties can look for what they each need to look for. But he did hold off ordering one because we said we just preferred Geoffroy take care of it for us.

Then, also yesterday, Brian saw the radiation oncologist. I wasn't able to go to that appointment, but it sounds like it was just a consultation. Brian seemed to like him. He goes back today and I think Friday. There is a lot of preliminary work to be done before they can start radiation. Brian will do that each weekday for six weeks, 30 or 33 sessions depending on the dosage. This will make him lose his hair just in the spot that they radiate, but he can still work so we will try to get his appointments first thing in the morning so he can just go home and rest because he will be tired. He may have short term memory loss which has him all nervous, but he may be just fine with that too. He prides himself on his memory and sense of smell, so we hope to keep both of those intact always ;)

Then they will do another MRI after radiation. I was glad Dr. Geoffroy warned us that with the post-radiation MRI, a lot of times it looks like the tumor is back with avengance, and this is actually a good thing because it means that area of bad tissue is very irritated. Then they do another one around two months out and it should look clean again.
Right now, Brian is at the CAT doctor hopefully getting the okay to come to work tonight. Which will mean he needs to get some sleep today between appointments and then head back to work. He is both nervous and happy about this. He is afraid he can't remember how to use the machines, but he is so smart that I know it will come back to him.
As for me, overall, I feel like we got really good news this week, but I am not as relieved as I feel I should be and I can't figure out why. I am edgy, anxious, I have lost my appetite and I can't sleep. For me, this is ultra stress mode. This is how I get when I am super stressed or deeply depressed. I really am surprised it took this long to get to this point in the first place, especially considering I don't feel like this is the most stressful part of the process. Maybe I was just so in shock in the beginning and now it is just finally starting to sink in that this is our real life. Yesterday as we left the neurosurgery office  and I headed to work Brian asked, "do you feel weird?" and we both did. I can't even quite put my finger on it but I am just...unsettled.

I haven't wanted to eat much this week and last night I dreamt that I looked at myself and I had grown very wan and frail almost like a skeleton. What did that mean? Anyway, when I got up I ate the last piece of chocolate cake that Brian had saved for me for breakfast. I need some stress management tools because school starts next week and I need to be able to focus. My nerves just feel shot!

This post turned out very long! I am glad I didn't wait until the end of the week because I am sure there will be more to report as we start the radiation process! Stay tuned and keep praying!

Love, Lindsey

Tuesday, August 7, 2012

Tender Mercies of the Lord



Today was a really nerve wracking day. Brian had his 6 month MRI today. We won't get the results of that until next Tuesday. We are actually gearing up for a really stressful week next week. We see the oncologist Monday, where hopefully we will get results from Brian's chromosome analysis that the doctor wanted to reevaluate. Pray for good news there. Then Tuesday we get our MRI results and say good bye to the neurology office for the last time. Then Wednesday Brian sees the CAT doctor and if all goes well, he will be back to work Wednesday night. As I have mentioned before, this is scary for me, but I know it will be so good for Brian to get back into a routine. He has been talking increasingly about work and I know he will feel better to get back in the swing of things again.

I have actually been having some health concerns of my own. Ever since we have been trying to get pregnant two years ago (this month! wow!) I have been having some "female" issues. For a long time I felt like I was sort of getting blown off and having to just kick the ball down the road to address them later. Then I met my current doctor.

If you need an ob/gyn, I can't recommend her or her staff enough. For the first time, she was willing to address my concerns. I was all set up to see her in February, but my appointment fell on Brian's surgery day so of course I had to cancel it. I had another one set up for this month so I just decided to sit tight and let Brian's issues settle down before I readdressed my own.

I went in 10 days ago and was met with such overwhelming kindness and compassion from the doctor and the sweetest most compassionate nurse I have ever met! (I hope you see this B!)  I filled the nurse in on what we have been going through and of course tears welled up in my eyes in spite of my best efforts to stay calm. She put her pen and computer down and just gave me the biggest hug, and that was the best thing anyone could have done for me. She said she didn't know what to say, but the hug said it all. She filled the doctor in and when I saw her she listened intently to my concerns and told me we could do a whole battery of tests to rule out all of my worries. So I got tons of blood drawn, had another test, and scheduled an ultrasound.

Last Friday I got my results back and everything was normal as far as the blood tests went. Except, SURPRISE! High cholesterol. Not terribly high, not even enough to do anything about it except watch my diet a little more closely, but honestly, this wasn't a surprise because of all my stress eating lately. I am not wanting health food, I want CARBS, bacon, and chocolate in all of their incarnations. As I type this I am munching on a banana bread recipe from Cooking Light. Its good, but nothing compared to Grandma Branch's cheesecake brownies that I polished off for breakfast. SEE!!! I HAVE A PROBLEM! But like my sweet Emily says, Meth is a problem, chocolate and carbs are not. Love that girl.

But back on track.

I was afraid I wouldn't be able to have my ultrasound done today and almost cancelled it, but the ladies told me to come in anyway and they would see if they could do it. If they couldn't, I could reschedule and they wouldn't even charge me for it. As I sat in the waiting room I prayed that God would at least let me get the ultrasound today. I was so convinced that something was wrong, and that my other test would come back with bad news too.  It turns out they COULD do, so I was really grateful.

Another thing I love about the office is that they play Christian radio in all the rooms. I was listening to a song about how God won't give us more than we can handle and I had to pray again. I asked God to please let my test be normal, because I know he won't give me more than I can handle, but dealing with Brian's illness is enough, I can't bear anything else in this moment.

My doctor came in and told me the ultrasound, and my other test were normal.  I was so relieved I could cry. I took the time to thank the doctor and the nurse because they are always so great. As a matter of fact, one of the first questions they each asked me today was whether or not we had heard anymore about Brian's tests. Its so touching that they would even think of that first. I know they care and I know that they have perhaps one of the most important qualities I look for in my health care professionals and that is compassion. Compassion like I can't even believe compared to some of the doctors we have dealt with in Brian's case.

And they aren't even just being nice to me because of all of my extra stress. I remember one day back in the fall when I had my miscarriage. I had to go in for blood tests, a lot of them, to make sure my pregnancy hormone level dropped back down to zero like it was supposed to. It got to the point after four our five times that I was just so depressed going in there because each time I felt like I was losing more and more of that little baby I never got to meet. One day, my favorite nurse was hurrying down the hall to get a different patient and she saw me sitting on the bench waiting for my blood draw. She stopped in the middle of what she was doing and just sat down and hugged me. I will never forget that little extra bit of kindness she showed to me on a day that I didn't even have an appointment with her and she was obviously busy. I felt so loved in that moment that I was so sad. I know that Heavenly Father was aware of me in my sadness and I felt like that nurse was just an angel sent to confirm His love for me through her. She is very obviously a Christian and a shining example of Christ's love. Truly a tender mercy of the Lord.

On the way home I had a strange feeling. I was so relieved over my good news, but then I thought of Brian and his MRI today. I feel guilty that I got a clean bill of health. I told Brian about it and he of course said that's irrational, but I can't help it. I still feel like it is so unfair that he is sick. He in his wisdom and understanding said,  "its not fair, but its not unfair either. I just got sick, it just happened, but that is no reason for you to wish more sadness or heartache on yourself than you already have. We should celebrate that you are healthy!" I love Brian so much. I can't ever express it enough. He is my whole world.

In the midst of our trials and my disillusionment with some members of Brian's healthcare team, I wanted to make sure I highlighted the great and compassionate work that my doctor and her team do. The whole office is a pleasure to work with from the front desk all the way to the ultrasound tech who told me today that she would be praying for us. Please let me know if you are looking for a new ob/gyn. I will let you know where I go, you will want to go there too!

Love, Lindsey

Wednesday, August 1, 2012

Aloha!


I am once again grateful for sweet friends of mine. Today is my last day at Maui Jim. My last day of talking to people nonstop about sunglasses! This is bittersweet. While the job wasn't always the easiest, my co-workers were easily the best I have ever worked with. I have never worked in such a drama free environment in my life. It could be because we were all on the phones consistently, and so were too busy to get catty ;) but I really think there was just and understanding and a level of respect and comaraderie that everyone was able to share.
I started working there last year, and then this year, my supervisor called to see if I wanted to come back part time. I wasn't planning on going back, but I was able to arrange my school schedule so it all worked out. I know that God has a plan for each of us, and that I was just where I needed to be when Brian got sick. I was so overwhelmed with support from my friends at work. My supervisors were so flexible whenever I need to be at Brian's appointments.

Monday, I got ready to go and my friend Amy, who actually goes back to my courthouse days, stopped me and then she and Carrie came over with a gift basket and a card. There was a chocolate pound cake mix, a tupperware soup mug (which I have been eyeing for more than a year), and a recipe box! A handful of the girls I work with wrote down their favorite recipes for me! I couldn't believe it! I waited to read the card when I got to the car and its a good thing because it made me cry. I had so much fun looking at all the recipes and I can't wait to try them out. (I even found some delicious looking "soup mug mini microwave cake recipes" online!)

I will really miss seeing these girls each week. Jennifer and Tammy were the most easy going bosses, I will miss Trish, the best cubicle neighbor ever, and the way she put up with all of my crazy rants, I will miss Carrie and the compassion that radiates from her. Amy, Dani, and Kelli were always there with encouragement and genuine concern. Glenda and Debbie for their daily hugs, Lori for our health related rants,  Kris for ALWAYS checking up on me and Brian and wanting to go to bat for us with all of our doctors' office stresses. Kim for her sweet spirit, and Angie's thoughtfulness (she brings in food for people a lot and she is such a great cook, I look forward to trying some of her recipes!) 

I hate saying "Aloha" but I plan on keeping in close contact with everyone from my Maui Jim 'Ohana!