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 -

Treatments COMPLETE!

Matt's final radiation treatment, #38, was yesterday. See photo of him in his final wearing of the mask (which he got to bring home)(they were taking a side photo for Dr. H - cool, huh?) and the graduation "diploma" they gave him at the end! Now begins a couple weeks of recuperating and regrouping for Matt.

Oh happy day - weird day! Think about it: since Oct. 23, we have been on a track to find and kill the cancer. There were all the high highs and low lows, and "normal" life didn't really exist - however now we are, for the moment, DONE. No more zapping to deal with and schedule around; no more chemo and its meds to deal with (today, Saturday, Matt takes the last round of meds). Can you say yippee-skippy?!

With that being said we aren't done with it all - there are still check-ups to be had (mostly in April, early May) and the especially important first 6 months (so September 5 is going to be a big date for us!) to get through, but phew....

So fellow blog-trackers and well-wishers: THANK YOU. As Matt was telling the staff at Frauenshuh yesterday, especially Dr. H, he/we consider ourselves so fortunate on so many fronts. Good care and good prayers - it's hard to go wrong.

I will update this blog periodically over the coming months - especially after the check-ups and for sure September 6ish (although I imagine we will see or talk or somehow connect to each of you in the coming months). If "the nasty" comes back we are prepared and this will be update-central again, but stats say that risk, while there, is slight so we are hoping that "All About Matt's" days are numbered....

Thanks to each and every one of you: the multiple generations of McLanes and McFarlands, friends close by and in Oregon, California and elsewhere, and the friends of friends who have been tracking and caring all along the way. We truly couldn't have completed this current journey without you. Thanks and our love to you all...

Signing off for the moment,

Cathy with and for Matt (who still sleeps this morning!)

ONE LAST ZAPPING TO GO!

Oh boy - tomorrow is the FINAL RADIATION TREATMENT. We are kind of excited...Well, Cathy has the energy (barely but) to be officially excited...Matt is just plan looking forward to being DONE. He is pretty tired and the stomach is only so-so, but we are somewhat used to it being this way for a chemo week.

Check out his neck as of the other day...It's hard to capture in a photo but I thought I would post for posterity. He is very brown/bronzed - almost purple in the radiation area. It will be interesting to see how long the effects 'grow' and when they will start to reduce, especially with radiation ending....

More tomorrow as we end this chapter and begin the next!!!

Home At Last

Home at last! Geesh - we are glad this wasn't our first chemo day or it would have been hard to "look forward" to the rest....

Nothing really went wrong - they were just running behind, Matt's labs took forever (see photo of him getting his labs stick, left above), we got to see Dr. H (rad-oncologist) after radiation (see photo left below of Matt wheeling down to radiation from the chemo condos) so everything just took longer than 'normal.' Matt is set up for getting fluids/saline tomorrow and Wednesday, right after radiation - and, as I blogged early, then there will only be two more/final days of radiation - yippee and then some! So FRIDAY is the last day. Matt will be tired but anyone that wants to meet me in the radiation therapy parking lot to give a cheer, let me know.

So far tonight, the good anti-nausea drugs are doing their gig. Matt is feeling sleepy but okay. We realized we forgot to refill a couple of the drugs so Cathy has to make a night run but that's easy as our local CVS is only about a half-a-mile away. Here is to the final week of it ALL (god willing, knock on wood, keep your fingers crossed and keep those prayers coming?!).

Of note: the first round of post-treatment check-ups are now officially scheduled! We are to call Dr. Doogie (ENT) for a check up mid-April (he will make the call as to when Matt gets a new PET scan - Dr. H thinks 4 weeks is actually too early)...and we have an appointment with Dr. Lorrie (med-oncologist) for April 1 (April Fools Day - I can't decide if that is good or bad). As of Friday, it will remain for us a hyper-watchful mode for 6 months (and a few years beyond, it's true) but Matt has done everything right and has gotten good and semi-aggressive treatment so hopefully ...

Final Chemo - A Long Day

We are actually still at Methodist - it's been a long day. Got here before 9am and it's going on 5pm. Get us out of here! Matt currently is dozing as the last of the Cisplatin..we have watched three movies - a new record.

More later..

Oh! But good news: last radiation treatment IS on Friday!!! So we are truly in final countdown mode.

A new nurse is here so hopefully we will be released SOON.

Final Chemo Prep - Yippee!

Boy, we are pretty boring right now - and hope you all agree that is a GOOD thing. :-)

Matt is prepping for the final chemo on Monday...The arms are shaved (so the IV tape doesn't pull hair), his weight and white blood cell count are both good although his labs taken on Monday morning will the the true test....We hope and assume that the final treatment will be pretty close to the others - keep your fingers crossed.

The one thing we have been told is that now, these last couple weeks of radiation with the chemo, will have the greatest acceleration of the side effects (fatigue, dry mouth, sore throat) but we feel Matt is starting at such a good place that we are just not overly worried about it. Plus, the end is in sight and that helps soooo much.

One fun little story to share: Matt's new boss has two daughters who are working on a science project for school and they (with a little help from adults) chose to focus on the subject of radiation for cancer. As such, the whole clan met Matt at Frauenshuh yesterday for a tour of the radiation center and an 'interview.' Matt showed them his mask and they got to see the radiation therapy room and talk to some of the therapists, etc. and also then visited the resource library there. Pretty cool! I am thinking budding doctors or scientists perhaps? And what a great, non-scary way to help them learn about "cancer!" Matt said it was really kind of fun....And fun is really great to have right now on any front.

So - more next week. Not sure if you all are thinking about it but we sure are: the end of this blog may be in sight?! For sure we will keep it up to and through the final treatments and the first post-treatment PET scan and appointment with Dr. Doogie (it will feel like such a full circle) which should be in mid-April. And I think I will use it to post/track the follow-ups through to, for sure, month 6 post-treatment (the critical, most likely cancer recurrence period)...but then after that, who knows?! I guess we could always use it to post dog photos (ha - just kidding...)

Take care all and more on Monday after chemo.

Huh. 3 more added but not to worry

Well, it's not a huge deal but the drs are adding three more radiation treatments to Matt's regime so...

Last radiation will be Wed., March 10. If anyone wants to meet us at Methodist to celebrate "the end of treatment", just let me know! We will have important check ups yet to get thru, but hey we are moving, hopefully!, in the right direction.

Only 10 more radiations and 1 chemo to go!

Not that we are counting down or anything...

There isn't much to report out on - Matt is doing remarkably well . . . I kind-of don't want to write more because I don't want to jinx anything!

More later this week....

In-Home Therapy: Gotta Love the Hot Tub

Chemo week #two was essentially the same as #1 with some added intensity, just as the drs. predicted. While his mouth and throat are sore, it is the fatigue that is truly moving in. The taste buds are officially on the blink - some things taste great; others taste like metal. Naps were the order of the day, for the whole week. And working to deal with the chest-stomach spasms/nausea was about a full time job - as it was last time around. Today, Saturday, is the last day using the chemo meds, yeah.

One of the other side effects we hadn't mentioned before are the muscle and joint aches and pains - they hit Matt pretty hard, both times. Added to his existing bad back means even leaning over the sink to brush his teeth is, literally and physically, a pain. As such (thank goodness we had a new water heater put in @ New Years!) our mongo hot tub is his new best friend, and comes in a close second to the radiation center as his home-away-from-home. See photos of him from this week (I made sure they are family-friendly) - this is how he now brushes his teeth, above (super important given the impact on his salivary glands), flourides and just in general soaks the aches away. The plastic glove (weird-looking we know! It's a vet glove...don't think about it too hard...) is protecting his IV which was still in for getting saline after chemo. We hadn't realized what a boon it was to have the tub - both his chiropractor as well as our medical oncologist recommended hot tubs (non-public) as a great therapy. (I wonder what our water bill will look like! Should be interesting....)

Nothing else to post....Only 15 more radiation and one chemo therapy sessions remain...chipping away at that damn cancer. More next week....

Feb. 9 Update: Chemo #2 Complete

Yet, again, oh-so-happily: we don't have much to post today. Chemo #2 went about the same as #1 - to a certain extent, because we knew what to expect, it was almost a touch easier (well, except for the flippin' snow and extended commute to the hospital!). Matt had one of the lovely "chemo condos", got his saline as well as the Cisplatin no problem, radiation went off without a hitch - onward we go.

Today was okay too. Again, because we know what to expect we were able to prepare...I gave Matt his mega anti-nausea meds while he was still basically asleep, and he knew to not move around too much, too fast during the day. Peter, our brother-in-law, provided transportation today (thanks again Peter!) and is on again tomorrow; Dad/Dick McF is helping us out Thursday and Friday (thanks in advance, Dad).

Matt saw Dr. H (radiation oncologist) today and it is all looking good. He too is happy that the side effects are staying at bay (but warns week 5 - next week - will be tougher) and assures us the radiation IS working and the cancer is 'not happy' - even though Matt's mouth and throat has not developed open sores and all that. Boy, we are SO glad he (Dr. H) made sure to look out for Matt's quality of life and that he decided/was okay with only radiating the one side of the neck. If he (Matt) was getting both sides, this all would be that much worse....As Rob, a fellow neck cancer survivor (and blog-follower) wrote to us the other week (and this is Cathy's paraphrasing) "you have to feel badly for all those poor slobs who had to have their whole necks radiated 'cause that is just what you did with this kind of cancer, not that long ago...." Dodged that bullet, thank you very much!

The Halfway Point

Friday represented radiation treatment #19 - the halfway point! While we know that the cumulative effects of treatment (especially with chemo and radiation combined) are such that Matt is not yet experiencing the halfway point for side effects - that is weeks away - it still feels darn good to be here, says Matt.

We don't have much to report as we prep for chemo day #2 tomorrow, but thought we would share out a special, handmade card Matt received from his nephew, Ian (8 years old), this week. We Skype with him periodically - with Matt's brother Jim and his wife Enika, from California - and evidently he wanted to send well wishes of his own. Matt is holding the card above, and here is what he, Ian, wrote:

My Christmas Gift

If I could give someone a gift I would give to my dad's brother. I would give it to him because he has cancer. I would make a card for him. I would treat him well. I would take some money out of my bank account and buy some medicine for him. I would go to his surgery to cheer him up. After his surgery we would go to a restaurant. In the morning I would play my piano and I would give him lots of hugs. This is how I would like to celebrate the holidays. By, Ian McLane

How swell is that?! We move into the next phase with smiles on our faces, that is for sure....

Nearing the Halfway Point

Today, Wednesday Feb. 3, represents radiation/treatment day #16 - just a few away from #19 - the halfway point for Matt (total treatments = 38). Yeow-zah!

We don't want to jinx anything but thought we should report out that Matt is actually feeling pretty darn good, considering. You would not leap to the conclusion the guy is going through both radiation and chemotherapy by just looking at him, that's for sure. This past weekend he was positively perky. Our mantra of the month: every day without barfing is a GOOD day and then some!

The skin on his neck/cheek has improved - the rash has subsided and the sensitivity has died down...The hair loss has slowed down for the moment (but is expected to ratchet back up after next week)...The inside of his mouth and throat are a little more sore, and he gets some painful jabs when he talks and/or swallows - but in general, he is feeling good (still going in to work for half days - wow!) and is still very self-functioning. His taste/the taste buds are kind of coming and going; currently he is going through a phase where water tastes like vegetable oil and grape juice like nectar - go figure. However he is still eating 'normal' food and has kept his weight up nicely which the drs are pleased about.

Monday is chemotherapy treatment #2 and given Matt's reaction to number one, we are hopeful that - with the help of all those lovely anti-nausea drugs, Prilosec, etc. etc. (see above photo!) - next week will be only a little tougher than that first one. We will let you know. We had an appointment with Dr. Lorrie (medical oncologist) today and his blood work was checked in preparation for Monday and all looks good/normal. White blood cell count is down, but not too bad and that's only to be expected with treatment. He picked up his chemo drug cornucopia today (photo above) so we are all set....

I wonder what movie we will watch - they have LCD TVs with DVD players in the chemo rooms. Is that perfect or what?! :-)

Nearing 30% Completion of the Zapping

Nothing huge to report today but given its the end of the week I thought I would post an update...

Today is radiation treatment #13 out 38 - Matt is starting to feel it (TIRED, kind-of punky and his stomach is pretty iffy again) and his hair is starting to officially fallout/thin, boo hoo. Neck and cheek rash has kind of stayed the same...But now comes the weekend when he (and his body) can regroup for the next onslaught.

Good news on the Cathy front: my arm bumpy-lumpy was totally benign so we don't have to worry about THAT thank goodness!

Love those calls, notes, emails, blog posts and everything! Thanks to EVERYBODY. What would we do without you?!

Jan. 26: Matt Update and Cathy's Bump

Well, today Matt has his radiation treatment #10 - whoo-ho! He is still feeling pretty good although with some ups and downs. Literally, overnight, he has developed a pretty obvious rash/red bumps all along his cheek and neck and he says it is officially uncomfortable (on the outside) now. He can't shave - but Dr. H, who we saw today also - said his beard hair will be falling out soon anyway so he won't have to worry about that. So...more later this week.

On a separate front: Cathy is going to share the post today!

Long story short, this summer I developed a small bump on my upper left arm, and given all this bad-bump stuff going on for Matt - and some concern about that stupid HPV virus - I spoke with my primary doctor and she referred me to a surgeon to have it looked at and taken out. I had an appointment this morning I thought was for a consult only, however the dr. looked at the bump, looked at me, asked if I wanted it out and when I said YES, he said, "do you want to do it right now?" and I said YES again, and voila 30 minutes later they cut the little puppy out, stitched me up and off back to work I went. I have this really groovy big bandage on my arm (check it out!) and it hurts a bit but nothing that Advil can't tackle. Matt offered me some of his pain meds but I am happy to say I don't need that level!

It's a tiny bit gross but a photo (of course!) is right; friendly RN (who helped keep me distracted by chatting with me the whole time) above. It ended up being the size of a pecan half so am really glad its out. The weirdest part was when they cauterized the incision site: there is nothing like laying there chatting with the RN and having wisps of smoke from your own flesh (he was sealing blood vessels) wafting above me!

The McFarland female genes do lend themselves to benign little lumps, cysts so the chances are best that is what it is - but it will be nice to know for sure (and plus, this way I will have my groovy arms back for the summer!).Results from pathology later this week. So that's the Cathy update!

Thursday Update: Thumbs Up?

Well, while it is still somewhat early in the chemo-effects cycle, I thought I would do a quick post: other than some major (and uncomfortable) hiatal hernia spasms of his chest, Matt is feeling pretty darn good. Thank goodness for better living through chemistry, and powerful anti-nausea drugs! Today is the first day off of the most major one, Emend, and so we will see how his stomach does but so far so good. As he says, "every day without barfing is a good day."

He has been getting extra fluids (2 liters of saline via IV) each day - to help flush out the Cisplatin and help clear his kidneys - and the only other note to report is that Matt can hold fluids like you wouldn't believe. He gained 17 lbs since Monday and it is ALL water weight they think! As such, they are dialing him back and down off of the 2 liters and have given him something to pee more often...

The radiation effects have not kicked in yet too much, FYI. Matt says he can feel the 'zapping' and his neck is just starting to look a little sunburned, but its not too bad either right now. By the end of next week it will be interesting to see what's what. That is when others have told us his taste is likely to go....

That's it for today. Thanks to our recent visitors and to my sister for the fab food!

#1 Chemo Down

How can they schedule a first session of chemotherapy - with its promises of nausea and all that - not only at 7:20am, but on a 'holiday' Monday no less! It should have been a perfect day to sleep in gosh darn it.

But alas, chemo called. So off to Methodist we went...Matt had his first session of chemo today and it actually - knock on wood - went pretty well. And he is continuing to feel pretty good - tired, but not too nauseous which is what it is all about. They were able to move up his radiation to match when the chemo was done, so we were out of there by 12:30pm I think. Our nurse, Cindy (above) has great too - able to keep up with Matt's unique sense of humor which is always nice to have.

So really, we don't have much to add or to say today, can you stand it?! Check out Matt is his throne in his very nice treatment room....

Yes to Chemo; Radiation Treatment #2

Highlights of yesterday, today....

1) Check out Matt at his new home-away-from-home: the radiation therapy center at Methodist. Tah-dah! The second treatment went okay. He was able to adjust his flouride trays - and Dr. Doogie prescribed something for the nasal drip so that hopefully will be better..and the mask is what it is. Matt is really tired - feeling a bit out-of-it - today after treatment...Hard to know if it's been the week (stressful, not a lot of sleep) or the radiation - we'll let you know.

2) Given the extra-capsullary + size of node + positive margins, radiation-plus-chemo is the final agreement around treatment of this cancer. Matt's first chemo session will be on Monday. He will have three sessions, concurrent with radiation: the first on Jan. 18, the second Monday, Feb. 8 [THIS IS A CORRECTION] and the final one will be the final week of radiation - March 1 (final radiation treatment will be March 5, god willing).

3) We learned all sorts of interesting new things about chemo. The drug will be Cisplatin...He may lose some hair (so today he got a "chemo haircut" and damn, he looks fine!) but it won't be permanent...He may have nausea but the chemo team will be working hard to prevent that so he is already prescribed all sorts of amazing anti-nausea drugs....Fatigue and the other key radiation side effects (such as dry mouth and, the potentially 'worse' mucositis/inflammation of the mouth and neck tissues) will be exaggerated - but so much depends on Matt's body so it's hard to call it. There are two really bad potential side effects we will be watching for: neuropathy (nerve damage in the hands and feet) and kidney problems - but Matt is in such good shape, and he will have blood checks every week so those possibilities while out there, are HOPEFULLY nominal.

4) We have an appointment with a nutritionist next Wednesday, FYI. Food and nutrition will be SO important. Cathy's foodie-friends (you know who you are): I'll be in contact....

So that is it for today....More later this weekend or after the first chemo treatment...

Treatment #1 (of 38) complete!

Today Matt had his first radiation treatment, whou - hoo. It went really fast as they said it would....Matt says he did feel a little something right after for an hour or so (a tingling and pressure in the back of his throat) but all is normal right now. The mask was tight and felt a little weird but not too bad. Only 37 treatments to go. Also saw oncologist - more about that (and photos of course) tomorrow. We are tired.

Radiation Begins Today and Matt is READY

Today is a big day: Matt undergoes his first of 38 treatments of radiation today, at Methodist. Oh boy. But he is ready freddy - proud of having gained a nice chunk of weight in preparation for radiation. This as ordered by the doctors, he reminds me to tell everyone ("and don't judge me!" he says). He also says he thought he would be able to hit 200 (such a goal) but just couldn't...all this after eating like a pig, every day, once the mouth healed. Check him out at 196 lbs.

Then we have an appointment with a Park Nicollet medical oncologist, Dr. Oa, right after. We are meeting with her primarily to finalize the decision re: yes or no to adding concurrent chemotherapy to Matt's treatment regime.

On that front, it is looking like Matt really should get the chemo. If yes, while he/we are prepared for the worse in terms of adverse side effects, he/we are thinking that maybe it won't be that bad.

One of the big news items from yesterday was a call from Dr. M at Mayo. They had requested and received the original biopsy slides of the 'pomegranate' (the neck lymph node) to look into finalizing once and for all, whether the node/tumor was extra-capsullary or not. Damn. It turns out the node WAS extra-capsullary which means the cancer was 'oozing' through its walls and into Matt's neck tissues. That combined with the fact that Matt's tonsil had positive margins means he has two out of two factors that recommend themselves for the additional treatment of chemo. Matt has to make the decision by Friday but I think he/we may end up doing it today with Dr. Oa...we will let you all know.

Photos and Updates

Okay - so that last post wasn't the shortest one ever. But given all we have gone through, learned, done, etc. etc. Wednesday through Friday - it felt short to me. :-) I have decided you all probably don't need or want all the myriad of details so am just going to do a couple updates and then share out some photos.

One of our fondest photos is from the start of this most current series of events: the very first appointment of Wednesday - a blood draw! Matt's veins are pretty tough to find usually (both his neck and tonsil surgeries took multiple sticks for the IVs) but Tran, whom Matt dubbed "the Blood Queen," found the one she wanted in the first try - it didn't hurt at all and Matt was out of there in minutes. He said (and posted on Facebook) it was the BEST blood draw ever. See Tran, above.

Update 1: Matt went back down to Mayo again on Friday for another PET scan. It was very interesting he said, especially in that it was NOTHING like the one he had up here in November. He was injected with a similar radioactive glucose but the actual scan took over an hour (the other one was only a few minutes). Also, very different machines evidently. SO. We think this is ideal as what a great (and potentially more well done?) 'baseline' image for his files.

Update 2: One of the key pieces we learned at Mayo on Wednesday was the importance of the first six months after treatment. Evidently, if a head/neck cancer reoccurs it reoccurs largely within the first six months. The two year mark is important as well and the five/six year marker (no recurrence) is of course the goal. As such, every day Matt goes by with no new cancer growth (and, ergo, the sooner he starts treatment) the better. It actually feels good to know this finite period of hyper-watchfulness, and makes all the various follow-up appointments and scans make even that much more sense.

Update 3: Thursday afternoon included - along with the discussion with Dr. H - the prep and fitting of Matt's plastic mask, that he will wear for all treatments. The one thing he is a bit anxious about is his ability to breath: because of the flouride trays he has to wear during radiation it is hard to breath through his mouth and so if his nose is stuffed up .... Could be hard. The techs said we would figure things out if and when that happens. The actual mask and the process of fitting it was pretty cool. See photos including the CT machines that is part of the fitting (above left), the mask being fitted over Matt's head and shoulders (below), Matt in mask and bottom, Matt with his very own treatment mask.

So, we are still reading and mulling over chemoradiotherapy vs. radiotherapy alone...Hoping to talk to some folks that have gone through it as well as other medical friends....More next week I am sure.

FYI for our Facebook friends: be sure you are 'friends' with Matt as he is able to update his status vs. his phone and he periodically updates/adds photos there with Matt-captions (needless to say, they are funny!).

Big Days, Big Decisions

We are whipped and while there is so much to post - so many variables and new bits of information and recommendations to be weighed (and of course photos to be posted, see Dr. M, medical oncologist, left, and Dr. F with his resident (about to scope Matt yet again!) below) but we just can't do it all tonight but here are a couple highlights:

- As we posted from the road, Mayo recommended chemo (in addition to radiation) but we (and frankly, no one) are just not sure. The survival improvement percentage does not equate to the misery factor of the combo treatment (radiation plus chemotherapy). We had a good appointment with Dr. H at Methodist today and he does NOT recommend chemo - he thinks it is just not worth it, even or especially given Matt's situation (his youth, good health, atypical for this kind of cancer vs. large lymph node, small tumor, positive margins on the tonsil). The adverse side effects, which are many and can be severe with radiation alone, can be doubled with chemo. So, we are meeting with a Park Nicollet medical oncologist next week for the final weigh-in.

- Regardless of whether or not we do chemotherapy, Matt will start radiation treatment next WEDNESDAY, Jan. 13, mid-afternoon. The treatment will be for 6 to 7 weeks, 5 days a week. The actual radiation appointment, each day, is relatively short in duration - Matt will be there for no more than 30 minutes...this to include checking in, undressing, getting aligned within the machine and putting on the treatment map, etc. So we are looking at an end date of mid-March sometime. A start and end date is ENORMOUSLY helpful thinks Cathy.

- In case you care, today Matt was also given the all-clear for radiation from Dr. Ha (teeth) - his mouth is healing great. Yeah!

- As alluded to above, we have an appointment with a medical oncologist from Park Nicollet (our first medical oncologist ever was at Mayo, yesterday, and his perspective was important while unexpected - he recommended chemo right away) also on Jan. 13. Matt will do his first treatment then we will meet with Dr. Oa. The decision to add chemo or not will have to be made within a couple days of this appointment.

- We spent a couple hours in the cancer resource center at Mayo (it is fabulous) and the Drs we saw yesterday - Dr. F/radiation-oncology and Dr. M/medical oncologist - gave us some additional information about studies, etc. Ergo, their rec for chemo. While it is a lot to read and absorb, at first blush it seems like really helpful information....We'll let you know. We are set for bed-time reading for MONTHS for heavens-sake!

- The HPV virus, which was found in Matt's cancer, is cited as the reason that he has cancer, this according to Dr. M. The way he describes it it does make sense. And no way am I going to be able to detail that in this layman's blog! While not "contagious" I (Cathy) am going to my internist tomorrow to talk about the idea of getting vaccinated for cervical cancer - which is directly associated with the strains that Matt has. This is not a huge deal but something to pay attention to, so...we are paying attention!

- One of the frustrations is turning out to be the inaccuracy of important processes such as pathology and scans....Not having a more detailed pathology of the lymph node ("pomegranite") is problematic; and the PET scan appears to be not as well done as some would like....We are getting that nothing is perfect, cancer can be hard to see; no one is 'god' - but this all still would be a little nicer if some of it was better documented - ah well. With that being said, Dr. M was so not-happy with the PET scan of last month that he ordered one done at Mayo (actually, he also ordered and we did it over lunch, another CT scan of Matt's chest for the spots-in-the-lungs check); Matt is going down tomorrow again for a Mayo PET scan - which we think will be a good one to have in general for baseline purposes. Loving that Hwy 52.....

So to summarize....
Matt is evaluating his options, and trying to figure out best choice: yes to chemo or no. He will have to, get to, choose. We have the appointment with the oncologist on Wednesday, but he (Matt) is going to (has already talked to) talk to Dr. Ha, Dr. Doogie...Sue and Mike's ENT expert in Utah....perhaps some other survivors who have done radiation plus chemo (thanks to Coralee and Steve and their friends) to see how the scales should tip. It is going to be a hard but important decision - stay tuned!

We will post more details this weekend so we don't lose them - for those of you that are into detail. It is still all quite frustrating, a little confusing, somewhat concerning - but hey, we will persevere and Matt will be fine on the other side of treatment - we are already persuaded of that.

Mayo Visit 2: Quick Update from Road

Well. A good day (tiring) but more hard stuff to process...Three top thoughts as we head home after a very full day of cancer:
1) Chemotherapy highly recommended by drs here (Dr. O is solo in his thinking from earlier visit but in his defense, pathology was still incomplete and the tonsils thus primary was still unconfirmed),
2) Chemo puts survivor rates MUCH higher. Now knowing primary was in tonsils and was spreading, how can we not do it?!
3) Treatment will be tougher; the recovery time will be longer. Chemo does add "more" across the board but seems very worth it. 

More details tomorrow.

Week of Jan. 3: to Mayo and Mask Fitting

Happy new year to all! While Matt and I started 2010 with a shiver (we had no hot water New Years Eve day as well as all morning, New Years Day! due to the installation of a new water heater and some gas issues....all was resolved eventually, thank goodness) we are good now: Matt's mouth is healing "like a teenagers" - this per Dr. Ha, the oral surgeon at the check up on Thursday - and the swelling is down...this is good, and Cathy thinks bodes well for radiation too? One can always hope!

We did hear from the Mayo on Thursday and Matt has been set up for some blood tests and a review and consult around radiation down in Rochester on Wednesday, Jan. 6. This is ideal as we have an appointment on Thursday, Jan. 7, with Dr. H at Methodist for the making of the mask Matt will have to wear during treatment. I assume at that time we will also set with him - based on Matt's mouth heal factor - the start of the radiation treatment. So hopefully the consult with Mayo will jive with what we have heard from Dr. H and we will be in a good place in terms of the area of the neck and intensity of radiation as recommended.

More later this week!