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| Men at Work |
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| New Ramp! |
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| Bald is so beautiful. |
Thursday, December 23, 2010
Symptom City!
Yesterday was the 15th of the 30 radiation treatments. Ramsy has been delighted to notice that in the last 5 or 6 days, there has been no worsening of his symptoms, plus he has quite good stamina compared to a couple of weeks ago! Hooray! This is very encouraging for us. None of the medical team can say for sure whether or not he will regain any of the abilities he has lost so far, as each person's case is so different; however, we would be really happy if he could even just stay where he is now.
Some of you have asked what his symptoms are right now, so here's the list:
We are glad to be spending this Christmas with family from Saskatchewan, Quebec, and Illinois as well as the family members close by. We wish each of you reading this a Christmas with moments of inner joy and peace, even if your circumstances are difficult and your heart is sometimes heavy. Something Ramsy and I have heard all of our lives and are now finding to be absolutely true and immensely helpful:
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6&7
Some of you have asked what his symptoms are right now, so here's the list:
- pronounced weakness on the right side. He cannot move his right arm or hand at all. His right foot drags somewhat when he walks, especially when he is tired.
- tiredness! Although as I said, this is abating somewhat.
- lack of concentration. It is difficult for him to read a book because of the sustained concentration required, but he enjoys reading magazines. Thank goodness for the weekly Maclean's issue!
- difficulty speaking. This takes the form of hunting for the correct word, flipping words or syllables around (if he is giving you directions, double-check on the "go right" or "go left" by pointing!), or slurred speech. This is all easier when he is well-rested, and gets more pronounced when he is tired.
- strange taste. As in food, not as in clothing or decor choices! Most foods have an unpleasant aftertaste for him. Sometimes he can drink his beloved coffee, and sometimes it tastes horrible to him!
We are glad to be spending this Christmas with family from Saskatchewan, Quebec, and Illinois as well as the family members close by. We wish each of you reading this a Christmas with moments of inner joy and peace, even if your circumstances are difficult and your heart is sometimes heavy. Something Ramsy and I have heard all of our lives and are now finding to be absolutely true and immensely helpful:
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6&7
Saturday, December 18, 2010
Daily Adjustments
Well, we have a new addition to our front lawn: a wheelchair ramp! Several very kind guys from town gave up their Saturday to allow Ramsy easier access to and from the house. They brought a backhoe, Cat, trucks, and dug out our silly sidewalk (those of you who haven't been here will not have been subjected to our irregular front walk, but we had always wanted to take it out!) and put in a really nice wood ramp. Even my spaghetti arms should be able to push the wheelchair up the gentle slope. Thanks, worker guys!
As I may have said before, Ramsy's symptoms really vary from day to day. One day his speech may flow really easily, and the next day he will struggle to find the right words; yesterday he could only manage walking from car to house with support, and today he could walk well enough to make his way alone (carefully!) down the stairs so he could talk to the workers in the front yard. We never know how a day will be, so each day we make little adjustments in our plans and expectations.
We are now about halfway through the radiation treatments, and the doctors say that the symptoms may settle out now. We are noticing that Ramsy seems to have more stamina and doesn't require quite so many naps some days. Our doctor was surprised yesterday that Ramsy still had all his hair; well, he doesn't anymore! In the evening we noticed it falling out at the treatment sites, so we got out the razor and played barber. Ramsy now has his dream haircut: a 50s pseudo-military look. If only I would let him grow a beard, he would be completely happy.
Many of you have asked about our kids. I think the best way to describe them is that they are doing as expected, which is quite well most of the time, with moments (or evenings, or days) where the difficult feelings break through. We have really tried to let them know that it's ok for their feelings to go up and down, and to feel happy sometimes and sad or angry other times. That's just how it is. We are thankful for trusted adult friends that they can confide in when they don't want to share their feelings with us.
As I may have said before, Ramsy's symptoms really vary from day to day. One day his speech may flow really easily, and the next day he will struggle to find the right words; yesterday he could only manage walking from car to house with support, and today he could walk well enough to make his way alone (carefully!) down the stairs so he could talk to the workers in the front yard. We never know how a day will be, so each day we make little adjustments in our plans and expectations.
We are now about halfway through the radiation treatments, and the doctors say that the symptoms may settle out now. We are noticing that Ramsy seems to have more stamina and doesn't require quite so many naps some days. Our doctor was surprised yesterday that Ramsy still had all his hair; well, he doesn't anymore! In the evening we noticed it falling out at the treatment sites, so we got out the razor and played barber. Ramsy now has his dream haircut: a 50s pseudo-military look. If only I would let him grow a beard, he would be completely happy.
Many of you have asked about our kids. I think the best way to describe them is that they are doing as expected, which is quite well most of the time, with moments (or evenings, or days) where the difficult feelings break through. We have really tried to let them know that it's ok for their feelings to go up and down, and to feel happy sometimes and sad or angry other times. That's just how it is. We are thankful for trusted adult friends that they can confide in when they don't want to share their feelings with us.
Saturday, December 11, 2010
First Full Week
We're feeling like we're into more of a routine these days, and this new normal is beginning to feel, well, actually a bit normal! As we made our way into Cancer Care one day this week, Ramsy commented that it is settling for him to go there every day. The beauty of the building, the calm feeling in there, the warmth of the staff, and the routine of the treatment all make it a pretty comforting place to be. (Not to mention the refreshment cart that comes around!)
We see our nurse and oncologist every Friday after the radiation treatment for a check-in. The nurse seemed a bit surprised that the steroids have not caused Ramsy's face and feet to get puffy yet, and told us to expect that to happen soon. He has not lost any hair, but has lost all strength in his right arm and can't move it anymore, and his right foot is following suit. He can walk with a cane, but we've decided to also use a wheelchair to help us out. His left hand is learning to do all kinds of new things, including operating a table saw and chop saw (assisted by his lovely wife, who would rather be on a long hike or maybe camping...).
Again, we must thank you for all the support, encouragement, and prayers that you are sending our way. We are so grateful.
Tuesday, December 7, 2010
Treatment Routine
I have realized from talking to a few people that we could explain Ramsy's treatment plan a little more clearly, so here it is!
Right now he it taking two forms of treatment: chemotherapy in pill form every day, and radiation therapy Monday to Friday. This double treatment will run for about six weeks total (30 radiation treatments) and then he will have a month off from all treatment to give his body a chance to recuperate. After that month off, he will have a scan to assess how effective the double treatment was, and then he will begin chemo in pill form again. We have been told that this second chemo treatment runs for two years. This makes us very thankful that he can take the pills at home and not have to travel to another town to receive it by IV! We have an ice cube tray marked with the different times Ramsy needs to take his assorted medications, plus a chart on the wall listing the order and amounts. He takes an anti-nausea drug first thing in the morning, waits half an hour, then takes the chemo pills, waits another half-hour, and then takes several other pills with his breakfast, as well as a few more times throughout the day. So far I have put all the right pills into all the right sections....
For the radiation, Ramsy goes to Cancer Care in Winnipeg. The appointments are at a different time each day, but the team is very efficient once we get there. They are often a little ahead of schedule, so sometimes we hardly sit down before Ramsy is called into the treatment room. He has to state his birthdate each time to ensure they are treating the right patient, and then he lays down on a cushioned table and has a plastic mesh mask put on. The mask was molded to his face a couple of weeks ago and is marked so that it is easy to line up the radiation machine with the correct spot. The mask snaps on to the table to keep his head in position, and after the room is cleared, the technicians treat the tumor with radiation from four different angles. This is so that any healthy tissue that is touched by a beam only receives a quarter of the radiation, but the tumor itself receives 100% of the dose. The complete procedure, including getting on and off the table, only takes 5-10 minutes, and then we drive home again!
There you have it. I hope this answers some of your questions and allows you a little glimpse of our days.
Right now he it taking two forms of treatment: chemotherapy in pill form every day, and radiation therapy Monday to Friday. This double treatment will run for about six weeks total (30 radiation treatments) and then he will have a month off from all treatment to give his body a chance to recuperate. After that month off, he will have a scan to assess how effective the double treatment was, and then he will begin chemo in pill form again. We have been told that this second chemo treatment runs for two years. This makes us very thankful that he can take the pills at home and not have to travel to another town to receive it by IV! We have an ice cube tray marked with the different times Ramsy needs to take his assorted medications, plus a chart on the wall listing the order and amounts. He takes an anti-nausea drug first thing in the morning, waits half an hour, then takes the chemo pills, waits another half-hour, and then takes several other pills with his breakfast, as well as a few more times throughout the day. So far I have put all the right pills into all the right sections....
For the radiation, Ramsy goes to Cancer Care in Winnipeg. The appointments are at a different time each day, but the team is very efficient once we get there. They are often a little ahead of schedule, so sometimes we hardly sit down before Ramsy is called into the treatment room. He has to state his birthdate each time to ensure they are treating the right patient, and then he lays down on a cushioned table and has a plastic mesh mask put on. The mask was molded to his face a couple of weeks ago and is marked so that it is easy to line up the radiation machine with the correct spot. The mask snaps on to the table to keep his head in position, and after the room is cleared, the technicians treat the tumor with radiation from four different angles. This is so that any healthy tissue that is touched by a beam only receives a quarter of the radiation, but the tumor itself receives 100% of the dose. The complete procedure, including getting on and off the table, only takes 5-10 minutes, and then we drive home again!
There you have it. I hope this answers some of your questions and allows you a little glimpse of our days.
Friday, December 3, 2010
Done Day 3
Well, we are ten percent done the rad/chemo combo. Nausea has been minimal, but we are starting to realize, "Hey, this is every day for a lot of days!" I kind of snorted at an ad I heard yesterday: Remember when life was complicated? Uh, what do you mean was? And then I realized that, in a way, our life has been rather simplified for us. This is what we do now. Huh. Thanks to all of you who continue to help us adjust to this new life- driving us, cooking or shopping for us, encouraging us, and especially praying for us. We don't know what we would do without you!
I had this song on repeat while I was wrapping Christmas presents today. It's a song I never liked as a child (perhaps it was the organ/violin duet on the record!) but which I love now that I've heard Steven Curtis Chapman's version, and it helps me a lot:
And ye, beneath life's crushing load, whose forms are bending low,
Who toil along the climbing way with painful steps, and slow,
Look now- for glad and golden hours come swiftly on the wing.
Oh rest beside the weary road, and hear the angels sing.
Shannon
I had this song on repeat while I was wrapping Christmas presents today. It's a song I never liked as a child (perhaps it was the organ/violin duet on the record!) but which I love now that I've heard Steven Curtis Chapman's version, and it helps me a lot:
And ye, beneath life's crushing load, whose forms are bending low,
Who toil along the climbing way with painful steps, and slow,
Look now- for glad and golden hours come swiftly on the wing.
Oh rest beside the weary road, and hear the angels sing.
Shannon
chemo pills
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| start popping ... at least 20 at day |
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| 6 weeks of pills - $12,000!!! cost to us: under $400. whew! |
Wednesday, December 1, 2010
chemo treatment--day one.
Treatment has finally begun, and someone neglected to mention that I shouldn't eat after 10 o'clock last night, so after a wonderful piece of pie at four in the morning, it wasn't tasting so delectable at 10 this morning after the chemo pills went down!!! Urk.
Everything else is going okay. I have developed quite a distinguished shuffle in my gait (Katy says it's a hobble).
Monday, November 29, 2010
A New Journey
Welcome to our blog. We have received an overwhelming amount of care and concern and well wishes on our journey so far. To recap, about October 12, 2010 I noticed some lack of strength in my right hand and thought it was strange that I needed to concentrate more on holding my guitar pick. I didn't think much of it at the time. Over the next 3 weeks I noticed increasing weakness and lack of coordination in my right hand and then I saw my doctor and asked him about it. He ordered a CT scan within 2 weeks.
On Sunday November 7th, I was speaking in church and noticed some funny things happening during my message. I began to lose my balance and had to hold onto the podium, and at the same time, I noticed the feeling in my right hand and right side was going. By the end of the message, I had developed a pronounced tic in my right hand and I wasn't sure what was going on. I finished my message, sat down and immediately called a friend over to take me to the hospital.
Two CAT scans that afternoon revealed a brain tumour. The next morning I was taken to Health Sciences Centre in Winnipeg to speak with a neurosurgeon, who confirmed the diagnosis. I have a Grade 4 Glioblastoma on the left side of my brain which has affected my speech center, my motor control and the strength on my right side.
What a way to change your Christmas plans!
The last 3 weeks have been a whirlwind of tests, brain surgery, a biopsy, meeting my Brain Tumor Clinic team, and entering a whole new world. I am no longer working because of this and Shannon has a new full time job, taking care of me!
My symptoms are gradually getting worse and worse, and everyday I notice diminished capacity.
I begin Radiation Therapy and Chemotherapy on Wednesday December 1st. I will have this 6-7 weeks.
We will keep you updated but for now we want you to know that talking on the phone is very difficult and personal visits are limited to one a day, for 15-20 minutes. Thanks for respecting this. Many of you have expressed desire to get together and I hope you understand our situation.
Thank you so much for all your thoughts and prayers, for all the very delicious meals and for all the different ways you have supported our family so far. We feel loved and well cared for.
~Ramsy
On Sunday November 7th, I was speaking in church and noticed some funny things happening during my message. I began to lose my balance and had to hold onto the podium, and at the same time, I noticed the feeling in my right hand and right side was going. By the end of the message, I had developed a pronounced tic in my right hand and I wasn't sure what was going on. I finished my message, sat down and immediately called a friend over to take me to the hospital.
Two CAT scans that afternoon revealed a brain tumour. The next morning I was taken to Health Sciences Centre in Winnipeg to speak with a neurosurgeon, who confirmed the diagnosis. I have a Grade 4 Glioblastoma on the left side of my brain which has affected my speech center, my motor control and the strength on my right side.
What a way to change your Christmas plans!
The last 3 weeks have been a whirlwind of tests, brain surgery, a biopsy, meeting my Brain Tumor Clinic team, and entering a whole new world. I am no longer working because of this and Shannon has a new full time job, taking care of me!
My symptoms are gradually getting worse and worse, and everyday I notice diminished capacity.
I begin Radiation Therapy and Chemotherapy on Wednesday December 1st. I will have this 6-7 weeks.
We will keep you updated but for now we want you to know that talking on the phone is very difficult and personal visits are limited to one a day, for 15-20 minutes. Thanks for respecting this. Many of you have expressed desire to get together and I hope you understand our situation.
Thank you so much for all your thoughts and prayers, for all the very delicious meals and for all the different ways you have supported our family so far. We feel loved and well cared for.
~Ramsy
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