I am just doing some catching up and thought I would do a little June 1 update on ye olde "All About Matt."
In general things are good although neuropathy management is turning into a full time job for Matt, which while good - especially since he is unemployed - is still problematic and stressful. He is still taking tons of Gavapentin (sp?) and it really does make a difference; when he forgets for example the afternoon dosage (he takes pills three times a day) his feet start hurting within hours. Ouch. Gotta love that blue handicapped parking permit he got authorized by his primary physician!
In terms of prognosis, it's pretty much a given he will be on the drug for the rest of his life but we (me!) are hoping the dosage might go down with time...It's still only a year post-chemo, can you stand it?! Only time will tell....
He has also had another check up with Dr. Doogie (the ENT guy): he still has only 'soft' tissue in his neck. This is a good sign.
The most interesting piece here is that Matt has really noticed his allergies and hayfever tendencies are WAY down. We have had the windows open in the house on and off this spring (when it wasn't raining or cold) which historically we could never do due to the allergies kicking into high drive the minute pollen starts to pop. Not so this spring! Cathy is all excited as this means I can perhaps also light some smelly candles now, which again, I could never do as it would bug his nose too much.
Also, we are noticing his taste preferences have changed, which Doogie confirms is typical after radiation: between drying out the salivary glands and frying some of his (Matt's) tastebuds, things taste really different. Matt is doing a lot more cooking and we can tell that things for him taste pretty different than for me.
Anyway, still no sign of the return of the nasty and we are chipping away....Hope everyone is doing well as well. Signing off for June!
Tuesday, May 31, 2011
Monday, February 28, 2011
March 1: Neuropathy Getting Better
Just a quick update, here end of February.
Matt's regular check up went well, and his neuropathy is also improving (not so bad/reactive). He is still on super high doses of the neutron-stuff-drug, but Cathy is hoping that might get to come down in the next month or so? He has permission from Medica to get down to Mayo to confer with a neurologist who is evidently an expert with Cisplatin-induced neuropathy so that is one of his to-do's. He is taking a ton of vitamins - B12, A and D and more - this per recommendation of his primary dr. who has done research on this kind of neuropathy, and we think that is helping too.
The other big update is that he is officially unemployed - having been laid off from Street Fleet as of January 31. It is not unexpected and Cathy says it's a TOTALLY POSITIVE THING. They were so great all through the cancer crap but the time has come for him to move on, so moving on he is! It is one of the reasons we think he is truly feeling better on the feet/hand front. Lot's more time to rest and recoup.
So, more later....once he gets down to Mayo. Stay tuned....
Matt's regular check up went well, and his neuropathy is also improving (not so bad/reactive). He is still on super high doses of the neutron-stuff-drug, but Cathy is hoping that might get to come down in the next month or so? He has permission from Medica to get down to Mayo to confer with a neurologist who is evidently an expert with Cisplatin-induced neuropathy so that is one of his to-do's. He is taking a ton of vitamins - B12, A and D and more - this per recommendation of his primary dr. who has done research on this kind of neuropathy, and we think that is helping too.
The other big update is that he is officially unemployed - having been laid off from Street Fleet as of January 31. It is not unexpected and Cathy says it's a TOTALLY POSITIVE THING. They were so great all through the cancer crap but the time has come for him to move on, so moving on he is! It is one of the reasons we think he is truly feeling better on the feet/hand front. Lot's more time to rest and recoup.
So, more later....once he gets down to Mayo. Stay tuned....
Wednesday, January 26, 2011
No Glow for Matt (Which is GOOD)
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!
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!
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...
Subscribe to:
Posts (Atom)
