And the winnah is...

Last weekend we talked over our treatment options and we decided to go with the chemo drug that Ramsy has had before, just on a low-dose, high-frequency schedule.  From talking with the doctor and a couple of other patients, we know that this schedule can get around the resistance enzyme that some people have to the drug (which is possibly the reason that the drug was not very effective for him last time).  The chemo drug, temozolomide, is given together with Celebrex- normally prescribed for arthritis, it has been found to inhibit cell growth as well, and we hope it does in this case!

All the prescriptions arrived in time, so we were able to begin treatment on Wednesday.  The schedule will run 21 days on, 7 days off treatment with a blood test once a week (mostly in Portage- closer to us than Winnipeg) and a visit to the oncologist once a month.  I believe he will be having an MRI every 12 weeks again as well.

Including all the medications Ramsy is taking (anti-nausea, chemo, blood pressure, 2 types of anti-seizure, steroids, stomach protector, and antibiotic) he has to swallow up to 26 pills a day, divided into 6 batches.  This is proving to be a real challenge for him; so far it doesn't make him gag, but it does make him shudder every time.  Please pray for him that he will be able to manage this!

I have been very happy to see a couple of small improvements over the last few days: he has been able to lift his right leg and swing it forward at the knee to take a step instead of lifting at the hip and dragging the foot forward; he has also managed a few more words some days, and even said a 3-word sentence once!  And he seems not to be quite so foggy except when he is quite tired or if he has a headache; in fact, now that I know he has been having headaches, I have watched for the signs and given him some good painkillers.  When the pain is gone, the fogginess is often also gone, and I am wondering if he may have been having headaches more than he even realized.  You know how you just get used to a bit of pain and don't even notice it anymore...

Anyway, these little things have helped brighten some pretty dark days.   I am so happy to have him "back" a little more.  He is my favourite person, and it is really hard to go day to day to day without him talking.  We keep hoping for a miracle but try to live in the knowledge that there may not be one- or at least not the one we wish for.  Thanks again for your many prayers, encouragements, and the help you give us- whether it's money or gift cards, housekeeping, food, repairs, rides, videos lent or whatever.  It all helps.

MRI Results

We  had a very long day yesterday!  I was up at 4:30 and Ramsy followed at 5 so we could make it to Health Sciences for 7:00.  Blech.  I am not really a morning person, especially if that morning is actually still in the nighttime.  But we did it, had the MRI, had the blood test, went to crash at a friend's house in the city for a couple of hours, and then back to Cancer Care to see the Dr. at 1:00.  Then the radiologist had not read the scan yet, so we had to wait a little longer before getting the results.

Anyway, we were not very surprised to hear that the study drug did not help Ramsy, and the tumor is somewhat larger.  The doctor said that it is "not significantly larger", but there is some growth, especially in the spots that were smaller to begin with.  There is also still a fair amount of swelling, the same as a couple of months ago, so I figure that bit of growth combined with the swelling accounts for Ramsy's increased symptoms.  Ramsy was able to say a few extra words beyond yes or no in the office, but I had to do the talking for both of us.  Through the Dr.'s questions, and clarifying Ramsy's answers, Ramsy also let us know that there are some times when he has trouble understanding what is said to him, although it's not a large chunk of the time.  Still, this is worrisome to me, and hard to accept in addition to his loss of speech.

We have been offered a couple of medication options that we will be talking about over the weekend and making a decision on.  One is pretty standard and the other is newer.  I will be working on talking with Ramsy about them today and tomorrow.  That's a bit of a challenge as I have to imagine what he might be thinking on any angle of the discussion and then turn each idea in to a yes-or-no question.  (Interesting how I used to want to work as a translator....)

Even though we were pretty much expecting to receive this report, it is still saddening and frustrating.  Then, just to round out the fun for the day, Ramsy had a seizure in the van on the way home, and then another one in the evening.  Sheesh.  Of course, almost all of his seizures occur on weekends when we can't get hold of his doctor or nurse.  Hopefully there won't be any more this weekend.

Thanks for the love you send us and the prayers you say for us.  We need them a lot this weekend.

Uphill through the fog, both ways, in bare feet, in 4-foot snowdrifts...

We are 3 days away from Ramsy's MRI, and it is coming none too soon, let me tell you!  We are very anxious to see whether his increased symptoms are coming from rebound swelling (as mentioned in an earlier post, our doctor says that sometimes when a tumor shrinks, there is swelling as a reaction) or from tumor growth.  Then we will decide together with our medical team what the appropriate treatment is- continue with this study drug (also known as "the mystery drug" in our house) or return to the temozolomide (chemo drug from earlier) on a schedule of 3 weeks on, 1 week off. 

It is very difficult for Ramsy to talk.  He can say "yes" and "no" most of the time, and sometimes other individual words (especially "chips") or even a whole sentence ("I--would--like--some--more--soup.").  His right leg is quite weak, and he is noticing increasing fogginess, similar to what he experienced a few weeks ago before we increased his steroids.  This is discouraging for him, of course, and for the rest of us.  I try not to panic but to keep calm and get the job done, whatever job that is at the moment.  Funnily enough, the day before we found out he had a brain tumor, I picked up a cool tin in Chapters that I had always liked, and it was on sale, so I bought it with a gift card I had.  It's red and has a picture of a crown on it and says, in large friendly letters, "Keep calm and carry on."  It sits on my dresser and is amazingly appropriate over and over again.

Since we are not currently busy with speech homework, and the kids are around for summer holidays, we are doing more playing of board games, watching shows together, listening to audiobooks or books I read aloud, and that kind of thing.  I like to take Ramsy out in his wheelchair for a walk around town if it's not too hot for me, delicate flower that I am!  I can't say that my muscles are exactly toned, but I am certainly stronger than I was 6 weeks ago. (Thank you, Michael Jackson dance-along Wii game!)

That's all I have to say for now.... Stay tuned for further updates after the MRI.

Our playlist

Here's what we're listening to these days- some old favourites, some new discoveries; some to comfort and encourage, and some just for fun or to dance to!

To help us in the hard moments:

Dancing in the Minefields- Andrew Peterson (If you don't know this one, search the lyrics sometime, or buy it on iTunes. One of my very favourites.)
Someday- Nichole Nordeman
Little Wonders- Rob Thomas
Songs from Bebo Norman's album Ocean- God of My Everything, Everything I Hoped You'd Be, We
     Fall Apart
Blackbird- Sarah McLachlan

Just for fun:

Kung-Fu Fighting- Cee-Lo and Jack Black
Ob-la-di, Ob-la-da- remake by House of Heroes (also "It Won't Be Long"- fun Beatles covers!)
Stuck in the Middle With You- another cover- by Michael Buble
The Afterlife- Paul Simon (makes me chuckle as I'm dealing with bureaucracy and forms!)
Only the Lonely and Dream Baby- Roy Orbison (for my "olden days" kick)
Catchafire- tobyMac (to horrify my kids with my fake hip-hop dancing)
Don't Bring Me Down- ELO (Even the 15-year-old likes this one. :))