Springing into Summer in MN: With Sore Feet

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!

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....

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!

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!

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!

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?!

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...

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.

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...

July End Update

Well, here is the end-of-July-update:

Cathy was gone for a long weekend recently (all by herself, to visit Napa Valley and bestest friends in Oregon) and Matt told me, on the way to the airport, that he thought he was going to be able to go a whole MONTH without a dr. appointment - yippee. We got all excited...However, unfortunately it is not to be. The neuropathy is getting worse and as such, Dr. Oa, our medical oncologist, wants him to see and get more tests by a neurologist, to be sure to rule anything other than that which is a side effect of the Cisplatin (which Matt is pretty sure it is). Matt has an appointment with a new neurologist next week - argh.

This neuropathy is really weird, and really sucks. Last night it was so bad Matt couldn't open the Advil bottle - which he really needed as his fingers were so painful (like a bunch of bee stings) he couldn't sleep. Ouch. It also creeps into his elbows, knees and sometimes, now, shoulder joints. We understand this is somewhat typical of a side effect of Cisplatin specifically and of chemo in general, but it sure is no fun.

Its weird; it seems like our life has been organized/unfolding by "quarters" (3 months at a time): a quarter of surgeries, a quarter of treatment, a quarter of mouth issues, and now it looks like a quarter (actually, two quarters as it started really at the end of treatment in March) and maybe even more?! of dealing with neuropathy.

Sigh. We are still taking healing thoughts; send 'em Matt's way?!

A July update: 1 doctor down; 18 to go

We just returned from our summer vacation (camping/RVing on the south shores of Lake Superior) with lots of much needed sleep and relaxing for both of us. I reminded Matt, when we were wondering if we should feel guilty for sleeping in so much, that if our bodies didn't need it - we wouldn't be still sleeping at 10am in the morning. :-) This was one of the longest stretches without dr. appointments, for Matt, since October 2009 -yeow.

With this being said, since our return Matt has had a bunch of follow-up appointments, and happily things are finally looking really good (KNOCK ON WOOD). In a nutshell:
- saw Dr. Oa, his oncologist and while his hemoglobin is still low (from the chemo) he does not need to see her again, she says - yeah. So, medical oncology: COMPLETE.
- saw Dr. Ha, oral surgeon, and the "hole" in Matt's mouth is officially healing all by itself and looks good. Thank goodness. (Matt's final hyperbaric treatment was the Friday before we left.) His appointment included getting a CT scan of Matt's head to look for bone lesions, infection, tumors and it all looks nice and clear.
- Matt had his July PET scan and we already heard back from Dr. Doogie: it too is looking clear. Phew. Now, just another couple months (Sept will be the 6 months point which is big for this cancer).

The only thing that is still a bit up in the air is whether or not Matt should get a couple more weeks of oxygen therapy. We think it is helping Matt's fatigue factor (which is still pretty extreme - a combination of recoup from chemo/radiation as well as the low hemoglobin), and he is still hourly at work, so it wouldn't be the end of the world...However we are girding our loins to battle with insurance around this treatment as it is not covering all costs (and be forewarned: hyperbaric is nearly as expensive as radiation!!).

Other than all of this...the neuropathy is still present and pesky, but time will tell...Just slowly getting back to normal?!

Today is Matt's final day of hyperbaric chamber/oxygen treatment! And here is hoping the healing continues - this as we leave for our summer vacation (camping on the shores of Lake Superior, whee!). Currently, the oral surgeon is voting "no" for surgery (bone graft) but the hyperbaric dr. is still on the fence....So the hope is that upon our return, Matt's hole has closed up just a bit more (it's still there with anitbiotic gauze stuffed in it - but less gauze than ever before) and we just have to be patient and let it keep doing its thing at its own pace. Keep your fingers crossed...

Also, today Matt has his mid-summer PET scan which is kind of a big deal - feeling pretty good about that too but we shall see.

Party at our house tonight to celebrate Mam's 18th birthday and graduation - what fun...

Happy summer to all.

June is Here

Well June has arrived in MN and a fabulous start to the month it has been - warm/hot, sunny...lovely!

The Matt-report of the day: happily the oxygen treatment really seems to be working on the mouth. Dr. Ha took the gauze out yesterday to see how it goes - this is the first step toward the final phase of healing so it is great news. Matt says it feels funny but not too bad...Not unexpected given he has had a hole with something stuffed in it in his mouth for over 8 weeks!

Neuropothy seems about the same - not better but not worse. Matt is still doing acupuncture so perhaps that is helping.....

Let summer begin. :-)

Neuropothy Update

Well, I started an update last week as things were getting a little worrisome for us - but am only now getting back to this blog tonight. Where did the week go? Happily news on the Matt-front is better than we thought it might be. On the other hand, its been another one of "those" weeks: I had a friend fall and fracture and dislocate her thumb (requiring surgery) AND Madalyn fell rollerblading on Sunday night and broke her wrist! (See her, Matt and friend/emergency-room-driver, Kaityln, above.) I have been in three hospitals in four days - including home-sweet-home Methodist. But Matt actually has me beat with at least one if not two dr. appointments plus the hyperbaric chamber EVERY DAY last week. Yikes. Check out Madalyn in the emergency room with her splint.

On the Matt-front: We had been getting a little anxious as while the oxygen treatments are easy, we hadn't really known if they are working and if they weren't, it spelled trouble for Matt. However Matt did see Dr. Ha yesterday and good news: the infection seems to be waning (and Matt is off antibiotics at long last!) and the hole seems to be closing up a bit.

Matt still has a-ways to go and the hyperbaric dr. is still predicting he may need a bone graft - but we are going to stay positive. Two more weeks and we'll know a little bit more about next steps. Treatment will be for at least 4 to 8 more weeks....It is definitely putting a crimp in his work day however, to say the least.

The one other chemo side effect I haven't really written about has been the growing impact neuropothy is having on Matt's activity. You will have to look up the definition yourself but it is essentially a nervous system effect, and Matt's feet and hands tingle and feel numb, on and off, all day. Kind of like having frostbite. There are some days and moments when it is actually pretty painful - almost like razor blades to the bottom of your feet or fingertips. He saw a neurologist the other day who didn't seemed to be terribly concerned but it is slowing Matt down quite a bit. It is very likely due to the Cisplatin but is predicted to wear off eventually. The frustrating piece is not knowing when it will peak (ergo how bad it is going to get) and thus when it will go away - it could be days, weeks or months. Yucko.

Matt is doing a couple different things to try to help control it, including acupuncture, vitamins, hot baths, etc. Hard to tell what works best - stay tuned! Also he has photos from the acupuncturist - we will post those this weekend....

Expert Breather @ Oxygen!

Had the consult yesterday with a dr. and team at the HCMC Hyberbaric Chamber clinic (see funny nurses - they understood Matt and his sense of humor within MINUTES of our arrival). Took a lot longer than we thought but its all good - Matt got a thorough check up, check CT looks good and in general he is in good shape, except for the darn mouth and the pesky infection.

Matt will start treatment on Thursday: every day, for an hour and a half each day, Mon - Friday, for at least 4 weeks and possibly 2 more after that. If the socket does not heal/close up Matt might still have to get a bone graft to his jaw but while the hyperbaric dr. is dubious our oral surgeon (Dr. Ha - we LUV him) is thinking positive. Keep your fingers crossed.

(Photo right: Matt contemplating the entrance to THE CHAMBER!)

More Photo Opps in our Future - Unfortunately

As a bunch of you know already: Matt continues to have trouble in toothy paradise. The darn wisdom tooth socket is not healing - which is ironic as it is the very reason he had the teeth taken out, prior to radiation. As you may or may not remember, one of the big issues with radiation is it permanently effects certain things like blood flow - which is directly linked to healing. Well, we are living that now - dang it!

As I had posted earlier, Matt had to have emergency oral surgery April 1 (whoops! wrong date posted earlier) for a deep, impacted infection in his lower jaw (site of the lower tooth extraction), and he has been going into the oral surgeons about twice a week for them to swap out the antibiotic dressing they use to keep infection at bay. (This as well as taking mega antibiotics.) When he had the teeth out back in January, he only had to have the dressings swapped out twice; unfortunately we are week six now and still the hole is not healing....He tried to go without the dressing last week from Monday to Wednesday, and in even that short amount of time without the dressing, the infection started back up. So he is back on antibiotics again and they are contemplating next steps.

He learns more later this week but it appears the first thing to do is get Matt into a hyperbaric chamber treatment program. (Something like this I think: http://mnhyperbaric.org/?gclid=CPeVusXYu6ECFQcMDQod9E5nAw). Sounds like he will do this for about 4 weeks, then there is a check-up or something, and he finishes with two more weeks in the chamber. He goes every day for about 90 minutes. The chamber helps push oxygen into the blood and in general should assist in the healing. More about that after Thursday.....If this doesn't work, its going to be about more surgery: he may then have to have a bone graft or something from his hip into his jaw - ouch! So cross your fingers for the chamber!

More later this week -

First ENT Check Up

Matt had his first follow-up with Dr. Doogie (ENT and our quarterback for all this) and everything is looking good. It was funny, when we walked in, he was blown away by how good Matt looked, and couldn't believe he hadn't lost most weight. Another affirmation of how lucky Matt ended up being with treatment.

Anyway, he did get out the dreaded scope but Matt had taken one of his happy pills so was able to get through it okay. But Matt then said he thought it was only fair that he, Matt, get to scope Doogie - ha! What a great sport - check him out as he is "about to get scoped..."

There are now 3 more follow-ups scheduled: a June one with Dr. Oa (med-oncologist, and that should be the last with her...really just making sure the chemo is done in Matt's body and his blood counts are back to normal), then a July PET scan as well as July f/up (3 months out again) with Doogie.

The mouth surgery healing still kind of sucks - the infection was pretty deep, but the check-ups with Dr. Ha have been okay and the antibiotics seem to be working so far. We definitely can tell that Matt's body/mouth is not healing as fast as pre-radiation. But slowly and surely...

So that's the update for the moment....

Scooping Out Successful

A quick update on the oral surgery: while it REALLY sucked yesterday (cutting into your jaw/gums REALLY HURTS) today is a little better says Matt. He is able to cut back a little on the painkillers and the swelling is already coming down. More next week - he has two follow-up with Dr. Ha to change the dressings and also the biopsy results should be back. No real reason to worry we think, but good to know...Check out loopy Matt (with phone/MP3 player close by) from yesterday. :-)

Toothy Trouble in Paradise

Oh man, wouldn't you know it: just when we thought we were over the hump, Matt has developed an impacted infection in his lower right jaw, basically the site of where the wisdom teeth came out 3 months ago! - and has to have another (small , but still...) surgery of the mouth to "scoop" and clean it all out. OUCH.

We are not sure exactly how it all happened but oh well. He has been working to get into the doctor because his jaw had been getting increasingly painful - and there was obvious swelling too - over the last week or so. We were actually worried it was a tumor or possibly a fractured jaw (which they warn could happen due to radiations effects on bone). Happily the xrays taken today (see photo) show something going on down by the roots of his molars that Dr. Ha thinks is just a nasty infection...But with that being said he does want Matt in and us to deal with it all right away before it gets worse. One of the good things is that Matt is far enough along post-chemo that his white blood cell count should be good and thus antibiotics will be able to be used. We find out tomorrow via a check up with our medical oncologist about blood, etc. so the timing is actually pretty good. We go straight from labs and that dr. appointment to the oral surgeon - oh jiminy.

More to follow I am sure.

Just a March Update

For anyone checking in -

You would not believe how quickly Matt is bouncing back! Ye gads! While his right chin/cheek is still smooth as a baby's butt (the radiation took out the beard hair there), his bronzing/tan is peeling and his energy levels are bounding back up (I actually hope you aren't reading this Rob!). The taste buds are still out of whack (which is, frankly, more of a pain for Cathy at this point than Matt...I just want a NORMAL grocery list again!) but with that said, he is able to drink Fresca again (his favorite) and in general is branching out food-wise in a number of small ways. He is also back at work, at least 4 if not more hours a day...And we took a super long walk with the dogs on Sunday and he was good the whole time - the fatigue is rapidly fading. Yeah!

More next week after the oncologist check-up and then again after April 7 when we see 'Doogie' and find out when he wants Matt to have his next PET scan. Tah -