Got the call today: Yippee skippy! Matt's one year PET scan results are in and news is great: there are no hot spots/glow areas at all - phew!
One year, and probably the most important year, DOWN. Can you say "yeah."
Also, FYI and in case you care - we went to a really interesting, good workshop on neuropathy last week, learning more about the many different kinds and why it is so hard to diagnose and treat. In the scheme of things I think Matt is now feeling a little better about his - it could be worse...and the medications DO help. They had a dr. there who was touting cold laser therapy and it seemed like it might be something to try on Matt's feet...Hmmm....We will have to see.
More later!
Wednesday, January 26, 2011
Friday, January 14, 2011
Jan. 14: New Year Update
Good heavens - we haven't updated the blog since Thanksgiving?! What's with that? It's time, it's time; especially as yesterday was the one year anniversary of the beginning of radiation. Monday will mark the one year anniversary of the start of chemotherapy....
We don't have much "news" to report, which is good and bad. I guess the two biggish updates are (1) Matt will have the all-important one year PET scan next Friday (Jan. 21), and (2) he continues to struggle with severe neuropathy and the pain and restrictions it brings.
Obviously since he hasn't had the PET scan yet (and then we meet with Dr. Doogie the first week in Feb.) there isn't much more to be said for that. This is the one where he gets injected with a special dye, that interacts with cells which are rapidly dividing (e.g. cancer). The goal is NOT to glow!
Around the neuropathy: Matt has been officially diagnosed with severe or hyper sensitivity neuropathy (that's not the official term of course, but Cathy's version; I'll ask Matt to write down the official term and re-post) and it continues to both frustrate and slow him down considerably. He has talked to a variety of doctors to try to get more data on this form of neuropathy (Cisplatin or platinum-induced) and possibly prognosis, treatments, etc. but hasn't been able to get anywhere. We are holding out hope the Mayo will come through - he has written letters to Dr. M, the medical oncologist there whom we saw, but haven't heard anything yet....
He continues to work part time - thanks to StreetFleets flexibility! It is very clear that when he exerts himself, or gets stressed, that his body/nerves react and it can be very painful. The other reality is to remember he is still only 9 months out from the end of treatment(s) and we were told recuperating could/would take up to a year and a half. We were talking about the neuropathy yesterday: it's like a very vigilant/ongoing bio-feedback system! Good and bad...We really are second-guessing that chemotherapy but there is no going back now.
That's it for us for the moment - more after the PET scan!
We don't have much "news" to report, which is good and bad. I guess the two biggish updates are (1) Matt will have the all-important one year PET scan next Friday (Jan. 21), and (2) he continues to struggle with severe neuropathy and the pain and restrictions it brings.
Obviously since he hasn't had the PET scan yet (and then we meet with Dr. Doogie the first week in Feb.) there isn't much more to be said for that. This is the one where he gets injected with a special dye, that interacts with cells which are rapidly dividing (e.g. cancer). The goal is NOT to glow!
Around the neuropathy: Matt has been officially diagnosed with severe or hyper sensitivity neuropathy (that's not the official term of course, but Cathy's version; I'll ask Matt to write down the official term and re-post) and it continues to both frustrate and slow him down considerably. He has talked to a variety of doctors to try to get more data on this form of neuropathy (Cisplatin or platinum-induced) and possibly prognosis, treatments, etc. but hasn't been able to get anywhere. We are holding out hope the Mayo will come through - he has written letters to Dr. M, the medical oncologist there whom we saw, but haven't heard anything yet....
He continues to work part time - thanks to StreetFleets flexibility! It is very clear that when he exerts himself, or gets stressed, that his body/nerves react and it can be very painful. The other reality is to remember he is still only 9 months out from the end of treatment(s) and we were told recuperating could/would take up to a year and a half. We were talking about the neuropathy yesterday: it's like a very vigilant/ongoing bio-feedback system! Good and bad...We really are second-guessing that chemotherapy but there is no going back now.
That's it for us for the moment - more after the PET scan!
Sunday, November 21, 2010
November Update (and Chapin turns 20!)
It's a cold and ICY November Sunday and I thought I would do a quick update....
Things are settling down a bit and while Matt's fatigue is FINALLY improving, that dang neuropathy persists, and likely will for awhile yet the drs say. One thing that has made a positive difference is that he (Matt) is working only 4 to 4.5 hrs a day - he thinks this really impacts not only how he is feeling at the end of any given day, but we can also tell he is much better as of Friday night. Yeah!
The meds still make him a little spacey but all in all seem to be helping. He is going to try to start going to the club more regularly (Cathy too!) to swim in the lap pool and soak in the whirlpool and that should help as well we think.
Wednesday marks the one year anniversary of our trip down to Mayo, with the infamous Dr. O who stuck his hand down Matt's throat and announced he could feel the tumor in Matt's throat. Geesh! Such a road we have traveled since....
Chapin is coming up for Thanksgiving - yeah! - Madalyn will be staying in Florida (big game at FSU!)...And then both kids will be coming home on Christmas day - all excited already....
Hope everyone has a great Turkey day!
Things are settling down a bit and while Matt's fatigue is FINALLY improving, that dang neuropathy persists, and likely will for awhile yet the drs say. One thing that has made a positive difference is that he (Matt) is working only 4 to 4.5 hrs a day - he thinks this really impacts not only how he is feeling at the end of any given day, but we can also tell he is much better as of Friday night. Yeah!
The meds still make him a little spacey but all in all seem to be helping. He is going to try to start going to the club more regularly (Cathy too!) to swim in the lap pool and soak in the whirlpool and that should help as well we think.
Wednesday marks the one year anniversary of our trip down to Mayo, with the infamous Dr. O who stuck his hand down Matt's throat and announced he could feel the tumor in Matt's throat. Geesh! Such a road we have traveled since....
Chapin is coming up for Thanksgiving - yeah! - Madalyn will be staying in Florida (big game at FSU!)...And then both kids will be coming home on Christmas day - all excited already....
Hope everyone has a great Turkey day!
Tuesday, October 26, 2010
One Year Anniversary: The Pomegranate
Saturday, Oct. 23, 2010: was the one year anniversary of the removal of the pomegranate, and the beginning of the cancer journey - YUCKO.
In theory we should be (we are?!) so happy about where things are (no lumps, no bumps) but honestly the neuropathy has got Matt so turned around, and the fatigue has got him so down, we are really just maintaining for now.
More later towards December...PET scan to come....Bring on the holidays?!
In theory we should be (we are?!) so happy about where things are (no lumps, no bumps) but honestly the neuropathy has got Matt so turned around, and the fatigue has got him so down, we are really just maintaining for now.
More later towards December...PET scan to come....Bring on the holidays?!
Friday, October 1, 2010
No lumpy-bumpies!
I am doing this on the fly as we are trying to head out for a little fall-camping, but wanted to let everyone know that Matt's annual physical was good and, more importantly, the check up with Doogie was yesterday and it all looks GOOD. Evidently "soft tissues" are a good thing...and Matt has lots of soft tissue in his tonsils, etc.
Doogie was able to confirm however that Matt's thyroid is on the blink - no surprise given it was radiated and then some. This is one of the reasons he (Matt) is struggling with such deep fatigue. He will have to get a prescription to help address - but we will tackle that next week.
Probably will post a photo or two as we come to the anniversary of this blog - geez, it's already been almost one year! More later...
Doogie was able to confirm however that Matt's thyroid is on the blink - no surprise given it was radiated and then some. This is one of the reasons he (Matt) is struggling with such deep fatigue. He will have to get a prescription to help address - but we will tackle that next week.
Probably will post a photo or two as we come to the anniversary of this blog - geez, it's already been almost one year! More later...
Saturday, September 11, 2010
Sept 6, come and gone; 30th official ENT appt
Well, the fateful and exact 6-months-from-end-of-treatment has come and gone (if this cancer comes back, 80 percent of the time it comes back in the first 6 months) and no lumpy bumpies! Matt has his official ENT appointment scheduled for Sept 30 so that's when Doogie will scope him and check things out...I think he also gets scheduled for another PET scan but not right away...So some big milestones coming and going! Thanks to you, niece Whitney for sending the congrats wishes on the day- of - you are amazing!
Matt is still dealing with the neuropathy. We thought the meds (Neurontin) were working at a nice low dose but he thinks that things weren't hurting so much due to the fact we were in the car a lot (drove down last weekend to visit Chapin at KU. Best weekend EVER!). So they have bumped up the dosage 3x; I have never seen such a big bottle of pills before in my life! Hopefully this will take the edge off for awhile.
So we keep chugging away....
Enjoy September! More on the 30th.
Matt is still dealing with the neuropathy. We thought the meds (Neurontin) were working at a nice low dose but he thinks that things weren't hurting so much due to the fact we were in the car a lot (drove down last weekend to visit Chapin at KU. Best weekend EVER!). So they have bumped up the dosage 3x; I have never seen such a big bottle of pills before in my life! Hopefully this will take the edge off for awhile.
So we keep chugging away....
Enjoy September! More on the 30th.
Sunday, August 22, 2010
August Update: All About Neuropathy
Not much new to report as August winds down, and September - with its all-important 6 month check up - looms: it's really just all about that pesky neuropathy.
Matt had an appointment with a new dr. last Friday, and it's official (ha!) he does have Cisplatin-induced neuropathy, duh. The good news is now that it is official he is able to get medication that will hopefully help with the pain/tingles/buzzing in his fingers, toes and joints. He started that medication the day we got back from dropping off Madalyn at college (Florida State University; we are now officially empty-nesters!) and we'll see how it goes.
They say it will take up to three weeks to kick in. It's interesting, kind of: even with all the resources available today, they really don't know much about neuropathy: exactly what causes it, how to estimate how long it will last (months vs. years vs. forever), etc.
Still also dealing with the fatigue, which of course they told us would be the case, for up to a year after treatment. So Matt just tries to nap on weekends, and maintains during the work-week...
No lumpy bumpies in the neck/throat, that we can tell - yeah. The official 6 month check up with Dr. Doogie is scheduled for later in September and will feel good to get to and beyond...Also, Matt's mouth continues to heal - the hole is getting smaller and smaller so that is a relief. What a saga the mouth deal was!
So that's 'All About Matt' for the moment. Take care all and enjoy the final days of August...
Matt had an appointment with a new dr. last Friday, and it's official (ha!) he does have Cisplatin-induced neuropathy, duh. The good news is now that it is official he is able to get medication that will hopefully help with the pain/tingles/buzzing in his fingers, toes and joints. He started that medication the day we got back from dropping off Madalyn at college (Florida State University; we are now officially empty-nesters!) and we'll see how it goes.
They say it will take up to three weeks to kick in. It's interesting, kind of: even with all the resources available today, they really don't know much about neuropathy: exactly what causes it, how to estimate how long it will last (months vs. years vs. forever), etc.
Still also dealing with the fatigue, which of course they told us would be the case, for up to a year after treatment. So Matt just tries to nap on weekends, and maintains during the work-week...
No lumpy bumpies in the neck/throat, that we can tell - yeah. The official 6 month check up with Dr. Doogie is scheduled for later in September and will feel good to get to and beyond...Also, Matt's mouth continues to heal - the hole is getting smaller and smaller so that is a relief. What a saga the mouth deal was!
So that's 'All About Matt' for the moment. Take care all and enjoy the final days of August...
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