Week of Dec. 28: Wisdom Teeth are Out

Hello and happy almost new year to all. We had a lovely Christmas with family and friends - amidst lots of snow! - but to be honest, I think the best gift of all was a couple of "normal" days as Matt and I had Saturday and Sunday. Matt was able to eat anything/everything, there were no medications to take and monitor, no incisions to heal, there were no dr. appointments, no work requirements for either of us - it was swell.

However, it's back to reality and preparations for radiation.

This morning Matt had his right wisdom teeth out (top and bottom ones) bright and early. See x-ray to the left, pre-surgery. You can see the impacted teeth.

All went well; there were no issues with the jawbone nor the sinuses. Yeah! See Matt post-op all bundled up and escorted to the door via wheelchair. And of course, we also have to post a photo of the teeth (below, right). Not too bad, eh? (the lower one they took in a couple chunks). He is sore and on mega-meds again but as I type is snoring in the recliner so I have high hopes that sleep is not going to be an issue as it was with the tonsils.

We (happily) don't have much more to post at this time. We are hoping to get down to Mayo to get affirmation/confirmation around the recommended radiation treatment but we have to wait for that dr. to have time to review all of Matt's records and we only got them down there on Wednesday of last week. The next appointment (other than the teeth check-up) will be next week, Thursday, Jan. 7 for the making of the treatment mask (that should involve some cool pictures) and final prep for treatment. Actual date for treatment is still TBD - I think we have to see how Matt's mouth heals.

That's it for today. I will post toward the end of the week if anything new comes up.

P.S. And to those of our Maple Grove neighbors who are reading this: YOU GUYS ROCK! Thank you so, so, so much for all the amazing shoveling and snowblowing over the course of the snowstorm, both Wednesday and Thursday. It was a gift beyond price! Thank you, thank you, thank you.

Ho, Ho, Ho - OUCH

Week of Dec. 21 - Tuesday addendum:

You probably know this already but just in case you didn't: cancer, and all that it entails, doesn't take breaks over the holidays - what's with THAT?!

Today, Tuesday afternoon, it was back to Dr. Ha, the oral/maxillofacial surgeon. We met him at his Edina office (he has a couple - all over the city). Based on the very prelim "map" Dr. H faxed to him last week (location for the radiation; it is going to potentially overlap with Matt's right jawbone) Dr. Ha is recommending Matt's right side upper and lower wisdom teeth be removed by surgery prior to radiation. This due to the long-term effects of radiation to your bones (jaw) and teeth in terms of their ability to heal, blood flow, infection-defense, etc. If Matt doesn't deal with this now and something goes bad down the road, it will be twice as worse and twice as hard to deal with successfully. So we say, okay - count us IN.

Given Matt's age, and given the extent of the "impactness" of the teeth we gather this will be again, not a very pleasant surgery - it is significantly tougher then getting wisdom teeth out in your teens. I was reading a little bit about it and evidently the roots grow that much deeper with age, and the jaw bone is that much denser, making this a bigger deal at 48. As Dr. Ha pleasantly warns Matt, "this is going to be able the same as getting the tonsil's out." Oh goody.

In addition, yet again, Matt is "special": the wisdom teeth are close to both Matt's sinus/nasal cavity (you should see the x-rays - they are cool) as well as his jaw bone. Given both plus the desire to move to radiation (which is just plan old permanently hard on teeth and bone) soon, he wants to treat Matt's mouth carefully. He is actually going to consult with a colleague to see if he (the colleague) has any additional recommendations. Much of it comes down to being very, very careful with the jaw. Also, he said, the reality of it is he will know more when he does the surgery and can see what's what with the teeth and the jaw.

To top this off, given Dr. H's desire to start radiation in mid-January and the need to let the mouth heal - yet again! - for at least 3 to 4 weeks (during which time he has to be particularly careful not to stress his jaw bone and as such has to nibble only, once he can handle more solid foods), Matt-a-rooney has to get this done as soon as possible. We made an appointment for the Monday right after Christmas, Monday, Dec. 28.

So, just when Matt was thinking he would be getting a break for a couple weeks, AND was going to be able to eat anything he wants before radiation, this tooth surgery has to happen! Is that fair?! NO! Gosh DARN it! Get those Christmas buffets ready McFarland's - Matt is MOVIN' IN.

So, more - yet again - then you all want to know, but what can we say, sharing out helps us on many fronts. Thanks to everyone again for your notes, emails and prayers.

We look forward to enjoying Christmas with family and friends (and a good old-fashion, MN snowstorm too? The kids are supposed to fly to Florida with Lisa Christmas Day morning - yikes) and a "date night" (a movie and a fab dinner out) on Saturday - then we'll get back to all this cancer crap.

Our best wishes to you all....
Cathy with and for Matt

Week of Dec. 21: Countdown to Radiation and More

We have had a couple busy doctor days and while the reality of partial-neck radiation sinks in (it's a GOOD thing vs. the alternative of radiating both sides or all of his neck and head) other pieces continue to come together that makes it kind-of hard to be totally relaxed and upbeat. Specifically, Matt does have to have his wisdom teeth (right side only) surgically removed before radiation can begin. See tomorrow's post for details.

Here are our LUNGS and NECK/THROAT updates, FYI:
- Lungs: Matt had his 3-month chest scan and happily, the various spots mostly look "similar" or "unchanged." However, Dr. M says she wants him to get another scan in another 3 months time due to the nature of "this kind of cancer." Huh. We were thinking another one maybe in 6 months or a year...It all evidently bears watching - so I guess watch it we will.

- Throat/Neck: We also met with Dr. W (Doogie) as follow-up to the tonsillectomy. Matt's throat is healing nicely (you all are SO glad I refused to post the photos he had me take of his throat a couple days after surgery. Talk about gross.) and while we discussed with him our concerns about swelling of the throat during radiation - and its potential, subsequent impact on Matt's ability to sleep - he does not seem to be too terribly concerned. He also said he does not think prescribing steroids again (which really helped) should be a problem, but he will confer with Dr. H at Methodist. I think, net net, that so many of the side effects will be dependant on how Matt's body reacts to the radiation. While they most likely will not be worse than that which Matt experienced via the tonsillectomy (the throat part/pain anyway) they maybe, hopefully??!, will be slightly better. Hard to predict right now so we are just trying to be prepared. He is also going to hook us up with a registered dietitian which Cathy is excited about. How to keep Matt fat and happy and healthy during multiple weeks of throat pain is going to be a challenge.

One other quick Dr. W note: We won't see Doogie again until one month after the radiation is complete. Matt will get another PET scan at that time, essentially establishing a baseline - and after that appointment they will then connect about every three months for at least one year, maybe 2. Then it goes to once every six months until we hit the magic number of five years. Just get us there, puhleeze! Matt is bummed he can't wear the, what he calls, "cancer-free" yellow t-shirt until then. Lance - where are you when we need you?! Geez....

So that was Monday and Tuesday. I tell Matt I swear I am going to give him a calendar solely for cancer-appointments....but then we realized, his calendar now-a-days is essentially a cancer calendar. Thanks team-Streetfleet!!!!!

Treatment Update

Saw Dr. H, radiation-oncology/Methodist, today and got the scoop on what he recommends for treatment.

It is more good news/bad news: yes radiation, no chemo for sure; yes to a more general radiation of Matt's right side of his neck (tonsil bed and node area) but no to radiation of the left side. So - hopefully - Matt will be able to keep half his salivary glands. Treatment will begin mid-January, once Matt's throat has finished healing and then should be done early March (7 weeks). He, Dr. H, thinks - while a risk to not treat Matt's left side - that the benefits outweigh doing both sides at this time.

We are thinking we should be happier to hear all this - it's what we hoped for after the Un. of MN consult, but you know...it all still sounds like it's going to be the pits, for Matt. The side effects are going to be very hard on his neck and throat, and man, we just didn't need to hear that right now after last week!

We asked about, and he thought it couldn't hurt, going to Mayo one more time and revisiting Dr. O as well as another radiation-oncology dr. so we will probably do that, to get affirmation/confirmation of the partial radiation approach.

One other thing: Matt will have to go back to the oral surgeon, Dr. Ha, now that we know how the neck is going to be treated. Of greatest concern are Matt's wisdom teeth. They are going to be very close/part of the radiation area so.....We are going to try to NOT project on this one. Matt is going to make an appointment and we'll see what Dr. Ha says. If Matt has to get the wisdom teeth out, we don't know what that will do to the timing of the treatment but we will have to wait and see.

We do have an appointment set with Dr. H for a 'mapping' session when Matt will get his custom-made mask in preparation for the radiation treatments. That date is Jan. 7.

Next week Matt gets a final lung/chest CT and we see the pulmonologist to get the (hopefully) all-clear for his lungs. Dr. H said we would have keep an eye on those pesky spots - but didn't seem to be too worried....And we also see Doogie (Dr. W), late Monday, for a final check on the throat. We plan to talk to him at greater depth about what might help help Matt manage the throat swelling that is likely to accompany the radiation. We just can't take him not being able to sleep again due to blocked airways!

So that's it for now. Matt will be just fine, we know - but getting to the other side of this is going to kind-of suck. Ah well.

Take care all.

Monday Update: Appt with Dr. H on Thursday

I am remiss in not posting earlier today: Matt is doing MUCH better. He was even able to meet up with some friends at the Vikings game Sunday and had a good time (albeit came home with a sore throat - surprise, surprise. Nice to know he has priorities, eh?!). He is only getting up once at night to dose the throat with pain meds and actually was able to eat some soft pasta the other night. The mornings are still rough but he is on the official mend and can actually talk on the phone in the afternoon/evenings now....THANKS for the e-mails, visits, cookies (for Cathy) and all. :-)

The other update is that Matt does now have an appointment set with Dr. H, in radiation-oncology at Methodist, for Thursday afternoon. It should be interesting - we know much more than we did when we first saw him, nearly 6 weeks ago, and specifically now we know - finally! - the primary source of the cancer. Hopefully he will be able to answer our plethora of questions about what kind, how how extensive, treatment Matt is going to have to have.

We will post an update on the appointment later this week. Stay tuned.

He Sleeps

Friday morning: Matt sleeps! He is getting up to at least 4 hours at a chunk now - yipee skippy. I think we have turned the corner and am not even going to knock on wood. :-) He is still on major pain meds and living on Italian ice, but things are looking good.

The dogs sleep too (and they asked to be in the blog today) - Sogra sacks out in Matt's chair, and Argos is just basically zonked, on the couch. Check 'em out.

I don't think we will have much to report for a couple days now. Our next step is an appointment with Dr. H, radiology-oncology, at Methodist. Dr. W's office just told us to call ourselves, when Matt is feeling better, to set up our next consult with him. We won't be doing any treatment until Matt's throat is healed and that will be a couple more weeks. So I am guessing we will call on Monday. That appointment will help us learn what kind of treatment is recommended - we continue to hold out hope that that will be modified radiation of Matt's neck only, and no chemo. We will let you all know when we know!

Thanks again to all for the e-mails, texts, prayers and all. Stay warm (for our Midwest friends!); stay safe.

For Strong Stomachs: the Tonsils

Oh boy. Dr. W emailed us a photo of the tonsils - Matt insists on posting. :-) The right one is the one on the top - you can see how much bigger it is. Now you know what tonsils look like!

All About Cathy

Okay - I am grabbing a post all for myself...

Yesterday it took me 1 1/2 hours to get home (including the Rainbow stop for italian ices, vanilla ice cream, etc.) given the stupid snow and wind.

Madalyn came over for dinner which was fab - we haven't seen her in a week - and I think that really cheered Matt up.

Then, she left around 10pm and called 7 minutes later - in a ditch off highway 494. OMG. She is okay, and the car (Chapin's Passat) is okay - she actually picked a perfect spot to spin out we concluded. The car's tires were shot - which we knew - but they had not been replaced (which we had been asking about for MONTHS) and given the black ice on the road - it was almost inevitable that something like this would happen. We tried to take a photo to document (we are in that mode as you all know!) - not sure you can really tell but here it is. That's the Passat getting pulled out of the ditch on the right.

I called AAA (god I love them) and met her by the highway where not one but two tow trucks awaited, plus a state trooper - it was all good. It took quite awhile to get the car out of the ditch given its angle but eventually it came out and we arranged for the dude to tow the car to the nearest discount tire place. New tires are going on even as I type. Drove Mam to her mom's, then back home in the snow...to bed around 12:30pm.

Another rough night for Matt - the steroids are starting to wear off or something, and he has also developed a nasty cough which isn't too great in general, and for sure is rough on his throat. It is really depressing right about now, again. Argh.

But hey - woke this morning and was mentally preparing to go outside to shovel the driveway (which in theory I don't mind but wasn't looking really that forward to it 'cause I was tired and it was still cold and blowing) and GOD BLESS OUR NEIGHBORS: Jeff from next door had already been over and cleared our driveway! Wasn't that so nice?! So maybe today will be better. :-)

Primary is Confirmed (and Matt's Throat HURTS)

Got the call today from Dr. W: pathology confirmed there is cancer present in the right tonsil and it was spreading. A good thing we got it out when we did. He will be setting an appointment with Dr. H (radiology-oncology at Methodist) for us later this week/early next to set treatment. We may also do one more visit to Mayo - we'll have to see.

And, as everyone we had talked to prior to the tonsillectomy had told us, it is confirmed that having your tonsils out as an adult is HORRIBLE. Last night was really tough: Matt's throat is so swollen that he can't relax his neck/tongue and when he starts to fall asleep he ends up basically choking on his tongue and needless to say, is not able to sleep. So....he (we) are going on his third night of basically no sleep. Dr. W phoned in a prescription for steroids to help quell the swelling - here's praying they help!

Tonsils are OUT

The tonsils came out yesterday and the right tonsil continues to look suspicious. It was noticeably larger than the left one, and Dr. W said it also felt firmer which is another indicator. He did take a photo for us but we don't have it yet - they kind of look like pink oysters-on-the-shell! Check out some of our yet another fab surgery teams - can you tell they are having fun or what? (Matt was cracking them up, trying to shock them, of course.)

So we are home and Matt is recuperating. As predicted, his throat really hurts - last night neither of us got a lot of sleep. The cold he is getting over doesn't help. :-( The dogs are trying to be as sympathic as possible - see photo of Sogra trying to comfort.

I am off to get more ice cream, ice and popsicles - another update later. We will get results of the pathology on Tuesday hopefully.

Matt's Idea of Prep for Tonsillectomy

Buy gallons of ice cream at Cub.

Eat ALL the ice cream between Wednesday and Thursday nights.

Send Cathy for more on Friday.

!!!!

Yup to Tonsils Out Friday

Tonsils will come out this Friday, Dec. 4 - yeah.

Then pathology report with cancer status available on Tuesday, Dec. 8, hopefully. And yet another Doogie follow-up scheduled for Dec. 21 (same day as the chest CT - oh goody and the day before he has his final touch bases with the lungs dr. - we still need to officially rule out the nodes but just aren't too worried about them.). Hopefully? Potentially? somewhere after next week is another consult with Dr. H at Methodist (the radiologist-oncologist) which is when we will possibly? probably? know about treatment.

Can you say count down to Christmas? :-)

Yet Another Day, and More Waiting

I keep thinking daily or semi-daily posts are kind of ridiculous - we all have lives don't we? And yet for Matt and I right now, it truly is one-day-at-a-time and each day brings something new. Can you say exhausting?

Yesterday we got a chance to connect with Dr. W, our quarterback, and fill him in on the Mayo visit and talk next steps. Not much to say really. He has not received the notes yet from Mayo but he took a 'feel' of Matt's tonsils as well (Matt says it wasn't half so aggressive as Dr. O) and says yes he feels something but it is REALLY small and could be a nodule or something. He says we all really want the tonsils out and heavy-duty pathology done right away. We agree!

It turns out there was a bit of a scheduling snafu and Matt is calling on the tonsillectomy this morning to confirm he can get in on Friday - if not, we have to wait until next Friday - argh. Happily, it is an in-and-out/same day procedure so no more hospital stays - yeah. He says it will take at least a week and a half for Matt's throat to heal.

We also did talk treatment: we will be going back to Dr. H at Methodist once the pathology report is back, for a consult with him about the extent of the radiation therapy needed. While we hold out only a slim hope right now for no radiation, at least we can consider a more modified approach that isn't going to impact Matt's mouth...But we are FINALLY learning not to project out too far on that front. We just won't know until the report on the tonsils are back, and Dr. H has had a chance to review.

So...more waiting. I will post when we know about the tonsillectomy; the pathology reports will be available (in theory) the Tuesday after the surgery, FYI.

Something to be Thankful for on Thanksgiving

Well, we blessed and have lots to be thankful for in general, but are feeling particularly grateful today in that this whole cancer thing is not looking half so bleak as a week ago. Ye gads, what a ride this all is! Our heads are still spinning after yesterday but in a mostly good way.

As I mentioned in yesterdays post, the visit to Mayo was great albeit not anything like we had expected. We checked in at 7:00am (leaving the Cities around 5am, with Chapin in tow. It was really really great to have him with us for all sorts of reasons. See him with Matt to the left.) and as only Mayo can do, was seeing Dr. O, and ENT specialist with cancer expertise, by 8:30am. Meet Dr. O to the right.

It was actually pretty funny in that we had thought we would go through the now 10-page questionnaire Matt had prepared. We assumed we would be spending quite some time with the dr. but, after asking Matt to give a quick summation of his situation and asking him what we needed from him, he said let's start with an exam and see what's what.

What followed was amazing - but also incredibly uncomfortable for Matt: Dr. O examined Matt's neck, mouth, tongue and tonsils by hand. He was nice as pie but was serious about feeling EVERYTHING. As Matt says, the exam was as subtle as Patten's advance in Europe with the 3rd armored division! (You know Matt and his military analogies.)

Dr. O said he was 99% sure the cancer was in Matt's right tonsil - he said he could feel it. Wow. (Cathy note - okay everyone: just you try to feel your tonsils yourselves. See how far you can stick your fingers/hand down your throat to feel where they are - and see if you don't gag big time.) (I am still a little freaked out that he could feel it, this when the PET scan come back clear?! And does it mean it is growing fast since Doogie didn't see it when he biopsied the tonsils 4 weeks ago?) But the net net is that Matt has a tonsillectomy scheduled already with Dr. W on Dec. 4 (a week from tomorrow) so we consider ourselves well on our way around treatment - yeah!

As it relates to treatment, Dr. O came at it all with a very different perspective from the Un. of MN team. It made our heads truly spin - it was beyond surreal. In short:

1) He does not believe in chemo therapy for something like this. He said the risks of chemo - in this situation - is actually more dangerous than the cancer. Huh. But we were happy to hear that.

2) He said that next steps and final recommendations around treatment would/should be totally dependant on the combination of factors, specifically revisiting the infected lymph node they took out and looking at its state with how the tonsils look when they come out. He said if the tonsils are 'clean edged' AND the node isn't extra-capillerous or something like that, that he would question whether Matt would even need radiation therapy - WHAT?! However, and this is more likely the case I think? if the node is/was extra-capi whatever and even if the tonsils come out clean, Matt will still have to have radiation but, based on everything we have been told to-date, it probably can be targeted radiation. If targeted, that means Matt will hopefully (remember this is us, laymen, interpreting all the various opinions and recommendations to-date) be able to save his salivary glands, etc. etc. It still will be uncomfortable, but not half as bad as we were envisioning.

So, we are feeling really positive right now and eager to meet with Dr. W to see what he thinks on Monday. Also to get scheduled with Dr. H from Methodist again to get his opinion. We probably won't do that (final?) consult until after the tonsils come out, but we'll see what Dr. W says. In our minds, while the Un. of MN team was great, they are just too aggressive for our taste buds (no pun intended) so we are thinking we will end up at Methodist for whatever, if and as needed. It all still means Matt has cancer and a nasty one at that, but getting through to some form of 'cancer-free' state or remission or whatever one wants to call it, is looking very very good.

This is our news of Thanksgiving! More on Monday.

Blessings to you all....

GOOD news from Mayo!

From the car on the way home: Dr. O spent maybe 25 minutes with us. Stuck his hand (seriously!) down Matt's throat and was able to see/FEEL the primary in Matt's right tonsil!! We consider this SUPER news - for sure no chemo and very likely targeted radiation....more details in next post. Phew.

PET Scan Results are in and more....

A lot has/is happening - mostly good! Check all this out...

Matt underwent the much-anticipated PET scan yesterday (Monday) morning at Methodist and all went well. Check out photos right of the dye that was injected into him in its radioactive/protective case (that weighed 16 lbs evidently!). Also, of course, there is a photo of Matt and the machine (although no photos of the nice tech who worked with us - we are slipping on the photo front!). While granted I did not have to go through the hour of being intravenously fed radioactive material, I do have to say it was kind of funny: the tech told Matt he would be radioactive for about 18 hours or so, and to stay away from pregnant women and small children. (Seriously!)

Matt spoke with Dr. W (he is sooooo cool) later in the day and the news back on the scan is good although a bit frustrating: there is no primary evident in the scan. This is positive as it rules out any issues with his lungs (Cathy is very relieved) and confirms the cancer is microscopic e.g. no other nodes or areas have measurable (bigger than 1 cm) cancer. The frustrating part is it - potentially - means the general radiation is what they are going to recommend, to be sure to get the primary wherever it is residing.

Dr. W - as well as a subsequent call with Dr. C from the U of MN - did confirm: Matt for sure needs to have his tonsils out, and thoroughly biopsied, as a last ditch attempt to see if the cancer is coming from there. I think that surgery is tentatively scheduled for a week from Friday, Dec. 4, FYI.

We also talked to the U of MN team about the Tumor Board result. No huge surprises there but still nice to hear from them: they say too, get the tonsils out. Also they support Dr. C's recommendation of a couple weeks ago, that Matt should get concurrent chemotherapy with the radiation. Hmm. We are still not too sure (mostly because we don't fully understand it yet) about this whole chemotherapy gig. Thank GOODNESS we are going to Mayo tomorrow (as we will be able to get more information and thinking about all, from them).

Also yesterday Matt had a great visit with an oral surgeon, Dr. Ha (if there can be such a thing as "a great visit" when teeth and Matt are involved). Evidently he was very helpful on a number of fronts and has had experience with radiation, etc. He too is recommending Matt get his wisdom and possibly his back molars out and said he would talk to Dr. W about how best to coodinate that (it's two different type of procedures involving two different kinds of drs/surgeons). He also highly recommended Dr. O - who we are seeing tomorrow at the Mayo, and said he was top-notch and exactly who we should be seeing. Nice affirmation there! Meet Dr. Ha to the left.

So...We are a bit further along the path and that much closer to knowing what treatment will look like - yeah. After the Mayo visit tomorrow (we will post) we will be in a good place to have a better sense of 'what next' which will be able to be further defined, decided and set in motion with our Monday, Nov 30 appointment with Dr. W, our quarterback.

We (well, Cathy anyway) are also starting to be able to see to the other side of treatment. We know that some of December and all of January are going to be really hard and potentially hard hard hard for Matt (and will be tapping some of you for help!) but there is a tiny light on the other side, which is where we will land....Phew.

More after tomorrow...happy Turkey day to all. :-)

Poised for an Intense Week

Nothing much to report right now - but everything is starting to converge. And next week is going to be intense: getting lots of information and connecting with lots of family! I am going classify all as FUN right now! :-)

Dr. R from the Un. of MN left a message on our machine last night (even though we asked them to call Matt's cell!!!!) to say they had discussed Matt's case at the Tumor Board yesterday. Argh - eager to hear what they have to say but we will have to wait until Monday.

Monday Matt will be getting the all-important PET scan in the morning, and then in the afternoon is seeing a mouth/teeth surgeon for a consult on his teeth. Our dentist thought he should ask about getting his wisdom teeth pulled - as well as, possibly, two back molars - prior to starting treatment. So Monday afternoon he will be doing that. Oh goody.

We should actually be able to get the PET scan results on Tuesday: we'll either learn they do see something glowing (e.g. in the tonsils) OR they will see nothing - which will be frustrating but still good (the cancer remains microscopic). I personally really want them to final rule out those spots in the lungs....

Wednesday we head down to Mayo to work the system there. We are excited to be starting with a Dr. O - who was highly recommended as an ENT surgeon with cancer expertise. We will also be working to see a mouth/teeth doctor while we are there to get recommendations around helping protect Matt's teeth, jaw and whichever salivary glands as feasible.

Thursday is Turkey Day - that should be fun! We (plus kids - Chapin comes home on Tuesday night and may actually go to Mayo with us on Wednesday) will be attending the festivities at Mom and Dad's.

Friday, Matt's brother and wife, Beth Ann, and their son Michael will be here also for the holidays and we will be hosting them for a VERY simple dinner that night. We will be joined by Matt's kind-of second mother, Atashe, which will be great. We adore her and haven't seen her in ages.

Then the weekend will be all about catching up on sleep - maybe putting up the Christmas tree? - connecting with the kids, etc.

Monday, Nov 30 is the other big day. We have an afternoon appointment with Dr. W, our quarterback, and assume/hope we will be reviewing the PET scan results (and possibly the Mayo's thinking) deciding things like...
- getting his tonsils and/or teeth out prior to start of treatment. And if yes, should the procedures be done at the same time (can you say OUCH) or separately....
- what kind of treatment should be established: general radiation, modified radiation, with or without chemo, etc. etc.
- when Matt would start treatment
- where he gets his treatment.

Stay tuned.....

Date Set for Mayo Visit

We have a date and appointment set to visit Mayo to connect with - hopefully! - an ENT oncologist, as well as (this recommended by Dr. B, Matt's new dentist) a mouth/teeth dr/surgeon. We will go down there the day before Thanksgiving: Wednesday, Nov. 25! They told us too that we will be able to bring the PET scan results (happening on Monday) with us so it should be a helpful trip.

RX for Happy Dental Visit

From Matt -
RX for Happy dental visit:

Start with Lorazepam...as much as your Dr. will prescribe...Tell them you are unemployed and your dog just died and they'll give you lots of it...I like 100mg.

Next, start up the nitrous-oxide. FULL BLAST. It is good to hyperventilate just before you start it up because that opens the capillaries in your lungs so you get a better rush when they open the valve.

The last step involves ear buds from your MP3 playing the "Best of The Doors." Morrison utters the word "strange" 178 times ... each time is one more step beyond the space/time continuum. By the time "whiskey bar" is playing, your tongue will be a long green-and-orange snake extending from your mouth, slithering between stars out of the cosmos, and its eyes become quasars.

Networking Works!!!

Love all of your tips, emails, suggestions - check this out!

Matt got an email from a friend last night with a tip to check out a gentleman's story on Caring Bridge, which sounded a lot like his. So we did (visit it yourself here and/or excerpts below if you don't want to sign up for an account with the web site) and okay, we know NOT to get our hopes up and all that - but geez! He (Tom) was told by the U of MN, just like us, to get chemo, radiation and all that but he went to Mayo for a second opinion and the net net is they only did surgery and he did not have to go through all the rest! Our circumstances are different in a couple places - the size of the tumor and the fact Matt has already had surgery - but doesn't it just make you wonder?????!!!!!

**Nov 19 Addendum: Our physician friend Mike says "Whoa, laymen-friends!" after reading the above. He says what might look similar to us - with partial information on a personal blog - is inevitably very different for doctors and specialists. He, and this was confirmed by his ENT expert/friend, says do not get our hopes up around not having to have treatment (it is probably inevitable) but for sure to not get too caught up in the stats.**

So Matt is going to talk to Dr. W and see what its gonna take to get us down to Mayo, probably after the PET scan...

Stay tuned!

P.S. Hey he is going to the dentist today - huzzah!

TOM'S JOURNAL
Part 1
On July 10, Tom underwent surgery... A week later the pathology report came not as positive. The golf ball size mass included a 1.5cm x 1.5cm area of squamous cell carcinoma - cancer....It was determined that his tonsils needed to be removed as well as some additional biopsies in the neck area. Also the initital plan is for radiation and chemotherapy following the tonsillectomy.

First Tom underwent a PET scan to determine a possibly primary site and possibly spread to other areas in his body. The results showed no indiciation of cancer. This was good news! ...

[They then decide to get a second opinion at Mayo, even with various procedures, etc. set in preparation for chemo and radiation for later that month at the U.]

Part 2
Mayo, what a difference this made in our lives! From the first trip down with Katie for the 2nd opinion she told you about ... was a night and day difference from what we had experienced before! ...Surgery went very well and Dr. Olsen and Dr. Peterson came in all smiles with the news that they found the primary, removed it, did biopsies next to areas and found NO cancer, as well as the lymph nodes had no cancer. You could tell that they were very pleased to be able to give us that info as we were to see and hear it directly from him. Knowing that this was all a preliminary result and that we needed to wait for the pathology reports to confirm them made the night easier. They did come back the next day with great news that confirmed no cancer in any other areas. NO radiation, NO chemo, put me on an every 3 month checkup for the next two years. Wow, do I/we feel lucky!!"

This Week: Getting More Info

This weekend we were able to center ourselves quite a bit.

Based on (a) the conversation with Dr. W (our quarterback), on Friday who - when Matt asked what he, the dr., thought his survival rate really should be - said 65% but also concurred with the Univ team's categorization of stage 4 (and also that the node was total cancer), combined with (b) a chat with our physician friends in Utah (with a good ENT friend) who said they just couldn't understand how the facts combined have turned so gloomy, we are clearer about what other questions we want to ask, and not feeling so depressed.

We are thinking we will return to Dr. H (Methodist radiation-oncologist) to ask the same questions as we did at the U of MN, as well as for sure we want to talk to an ENT oncologist, maybe even down at Mayo. Matt is so young and healthy and the single tumor/infected node so 'solo' that the Univ. team's take on it all just didn't seem to fit. So this week and next (which includes the PET scan, one week from today!) will be focused on better understanding the variables and the odds. We will see what else we can learn, and get a few more opinions - and share it out with you all.

Thanks again for all the calls, supportive emails and more. Gosh it REALLY helps, Matt as well as Cathy. :-)

P.S. Hey if anyone knows someone who has gone through head-neck radiation and/or chemotherapy and is willing to talk about it, especially someone who may have lost their salivary glands, Matt would really love to talk to that person. Let us know if you know anyone? Thanks.

Matt is Coming Up with a PLAN

Friday night -
Okay, we are better now - not quite so depressed! Phew.

Dr. C (from the U, yesterday) called Matt and they decided to postpone talking about his case at the Tumor Board because some of the chemotherapy drs weren't able to be there, and that's who we all want to hear from. So they will try again next Friday.

Matt also talked to Dr. W (quarterback ENT, we call him "Doogie") and had some of the U stuff confirmed, and he (Dr. W) is thinking tonsils out first (and thoroughly examined) and then once healed (2 weeks?) we would start treatment. Knowing whether or not the tonsils have the cancer will help us better ascertain how major the radiation/chemo might need to be....

Anyway, Matt is coming up with a PLAN :-) so more to follow! He may even do a post himself. Stay tuned and THANKS.

Consult at U of MN: Reality Sucks

News flash: you really do NOT want to be an "interesting and challenging case" as defined by the Mayo Clinic.

Thursday was hard, and not what we expected or had planned for.

We went to the Univ. of MN/Radiology-Oncology today for a consult/second opinion and spent from 1:30 to 4:30pm at the U of MN hospital with the great (and patient, with good senses of humor!) duo of radiologist/oncologist's: Dr. C and resident Dr. T. It's yet another 'team Matt' - check out the photos right.

Before I tell you about Thursday, I wanted to share out just a note about Wednesday - it was an up/down one for us in that Matt called Dr. W (our quarterback) to see if results had come back for the test for the HPV virus. They had, and we got a copy of the pathology report from the Mayo Clinic/Pathology dept (ergo, "interesting and challenging") and yes the HPV virus is present in Matt's cancer and NO they too did not see/find an indicator as to the primary source of cancer. They recommend that Matt get a tonsillectomy even though the tonsils do not show cancer (the data about this type of cancer says the tonsils are most suspect.) Also, the idea of the cancer being partially caused by the HPV virus really freaked us out, but we have learned since that is a minor detail and actually is good news as there is data that says radiation therapy can be more effective on cancers with that characteristic.

So back to Thursday and the U....

We - and Matt in particular, as you all know - are the consummate researchers and info-gatherers. We arrived with a 7 page (I do not exaggerate) list of questions (90) about the cancer, treatment, etc. etc. as crafted by Matt over the last 48 hours. I thought it might be overkill but when we were done, I was SO glad he had done all of them - we learned a ton on many important fronts.

They answered every single one of Matt's (and my) questions - wow, we couldn't believe they could give us so much time! and helped better frame Matt's situation. With that being said, it was some really hard reinforcement of much we have heard before, but which hadn't really sunk in....
A couple salient - and unfortunately all heavy - facts we are dealing with today:

1) Matt's case IS very unusual and concerning (interesting to the drs which is good and bad) due to his age (YOUNG!), health, lack of cancer markers but mostly due to the size of the tumor/pomegranate, the speed of its growth and the fact that all the biopsies to-date have came back clear. They are actually going to present his case to the U's Tumor Board (see earlier post) tomorrow!!!!! It's THAT interesting, baffling, and extreme.

2) Matt's case and specifically this cancer (and the size of the infected node) is "stage 4" (NOT good) and they would start radiation tomorrow if they could. While the PET scan will help (hopefully) tell us more and allow/provide reassurance that solely radiation therapy will be sufficient, the drs told us they were both leaning towards BOTH radiation and chemotherapy.

This type of cancer is aggressive and they say it is much better to deal with it now when it is involving fewer cells (millions) than when bigger (billions of cells). Dr. Cs quote was "we want to treat the cancer when there is the least amount of burden on the tumor (cancer)." Dr. T's sobering comment (when we asked about waiting or only doing partial radiation at this time (assuming continued unknown primary), "you do not want this cancer to come back pissed."

3) One of the additional reasons this is all a big deal is the complexity of the head and neck, and all the important/delicate glands, muscles, etc. etc. which are all packed in above your shoulder blades and below your eyebrows - e.g. behind your nose, eyes, your ears, salivary glands, tongue, sinuses, tonsils, etc. etc. It's going to be hard even to target the cancer even if or when they are able to figure out the source. You are radiating (which is TOXIC) some really important things, for lack of a better description.

4) I know I wrote this before but for us, it bears repeating: Radiation therapy for head and neck cancer - especially when combined with chemotherapy! which is how this duo is leaning - is not for sissies. I mean it's REALLY not for sissies. Actually, it sounds like something we won't be able to joke about much, at all.

If and as we move forward, there are many variables as to how they do the radiation (it will be at least 6 1/2 weeks, 5 days a week) but the bottom line is Matt will be a hurting puppy starting week 2 of treatment, and it will only worse....It will make for a very difficult January assuming/if we start treatment right after the PET e.g. in early December.

These doctors say Matt will probably be out of work for 3 plus weeks during the end of the treatment - yikes. [Matt says "Don't bet on that!"] This is more extreme than that which Dr. H said - hmm. Also (and we will get other opinions about this), the U team would recommend getting a stomach tube - which they say is not that big of a deal - from the get-go, to ensure there is a way for Matt to stay nourished for the whole treatment.

5) We talked more about survival rates (estimates only of course). We learned they believe Matt's chances of survival are 50/50, after five years, this given the size of the node (and ergo, stage of cancer). FYI, the basic stats for this cancer are 85% 5 year survival rate, with tumors at stages 1 or 2. Of note, given Matt's general good health and age, the chips are happily stacked in his favor so we are holding onto that....

We learned also some more about the U's facilities vs. Methodists', talked a bit about other places we could go to get yet more opinions and/or treatment (e.g. to places where they deal more often with this type of needed (complicated) radiation) and so are thinking about where Matt would get the treatment. No decisions needed there yet but as reality sets in we are considering all that too.

So. Did I say that yesterday was hard and really depressing? Oh yeah; I kind of did already.....Wanted you all to know as the support of family, friends, work colleagues and EVERYBODY really does help. (Don't get mushy with Matt however!) And we will need even more as this unfolds. I think the next 2 months are going to challenge us - and Matt in particular.....

That's it for today. We will post an update when we hear what the Tumor Board recommends or says, hopefully early next week. This as we approach final countdown for the PET scan (Nov. 23 but we won't hear results until Nov. 30).

Thanks to you all....

Dates Set For PET Scan and More

Well, some appointments have been set for us - we won't know much more until some of these happen so I thought I would share them out....

Getting a second opinion about treatment options/preview, with a Dr. C at the Univ. of MN/radiology-oncology, Nov. 12.

PET Scan: scheduled for Monday, Nov. 23 with the appointment to go over results (with Dr. W) set for MONDAY, NOV. 30. This is a biggy for us....

Chest CT scan to check back on the lungs is set for Monday, Dec. 21 with a follow-up appointment with Dr. M on Tuesday, Dec. 22....here's hoping for a merry christmas!

Thanks to you all for the notes...

Take care -

Stitches Out & Waiting Begins

Saw Dr. W, our ENT guru, today for a follow-up appointment PLUS got those pesky stitches out of Matt's neck! (For a with-stitches photo, see bottom). Lois did the honors and a lovely job she did - check out the photo right. So Matt is now stitches free - yeah! He has to still do some 'scar' minimization with ointments, neck massage, etc. but his neck is looking great and the swelling and redness is WAY down.

We spent the bulk of our time with Dr. W asking our list o'questions (after Matt has him don some ye old Jayhawks gear. Did we happen to mention Dr. W did his residency at KU/Kansas City? Small world! Chapin, our son, is a freshman at KU right now). No surprise to all of you - we have gathered quite a few questions since last week. Nothing really huge emerged from the appointment (and as such no super great news, but no super bad news either). A couple key questions were answered though, such as....

- The infected lymph node (the "pomegranate") had already been re-tested, and there is no doubt about it: Matt does have some form of ENT/squamous (flat cell) cancer. Oh well, one can always hope....

- The node is also being tested for the HPV virus. We understand that all this really tells us, if it comes back positive, is that the cancer can be more effectively treated with radiation - oh goody (not really). We still REALLY need, want to know the source of the cancer. We should hear back on this test (HPV) in about a week or two; the samples have to be sent out.

- Yes Dr. W has put out feelers to have Matt's case presented at the Univ. of MN's "Tumor Board" (I am not making that up!). This is a group of ENT/radiation/oncologists that come together regularly to review cases. Dr. W would actually go and review all the tests and learnings with the board at the U. It will be a nice way to get other opinions about what's what, and what our best options might be. He (Dr. W) is however going to wait until after we have results of the PET scan in (see next point) before moving forward on this front as they would likely recommend that as an obvious next step anyway.

- For sure a next big step is the PET scan. This will HOPEFULLY (but still no "100%" guarantees) show where, if present, the cancer is originating from. (I'll be honest with you all: we are really worried it is in the lungs...It is not a happy feeling.) Soooo, we don't know when that appointment is going to be for but probably around Thanksgiving - we'll let you know when we know. We will get the results the next day so that is nice to know. And then 4 weeks later, we will get the lung/chest scan so hopefully then all the pieces will start to be in place. Can you all hang in there with us for 2 more months - argh?!

- Matt asked a bit more about the radiation therapy - if he opted to not have that treatment, what might happen? Dr. W thinks Matt should strongly consider the treatment - but DID say it was a choice and there are no 'givens' in all this (especially about what might happen if all the tests keeps coming back clear). He also did not seem to think the radiation therapy was quite as extreme as Dr. H, the radiologist/oncologist we saw last week, did - it does REALLY make us want that second opinion, after the PET scan comes back and before we decide exactly what to do.

- Last, after the PET scan results are in and especially if they come back clear, Dr. W did support getting a second opinion from the U of MN (which if referred our insurance covers, yeah!). So that for sure is on our list of things to do once we hear back.

So that's it for the day. I think we both are a little depressed about this all being 'real.' It's weird to sit on the couch eating dinner, as we do every night, and realize cancer is officially part of our world. Oh well, Sogra and Argos don't seem to mind - they just LUV Matt the way he is!

Matt with stitches, for posterity!

Did You Know Matt is an Expert Breather?

This is going to be a shorter update, 'cause Cathy is TIRED.

Today was the lungs check-up; we saw Dr. M, a lovely pulminologist (is that how you spell that?) today - who also happens to be a Blake parent!

We went to see to get more information around whether or not the spots visible in Matt's earlier chest CT could be connected to the cancer. The appointment started with Matt puffing and breathing into various tubes and hoses (all the while cracking inappropriate jokes with our respiratory therapist, who was able to zing him right back, it was a riot! See photo.) And of course there was a running theme/reply: whenever asked how his breathing has been, he just always replied he was an expert - being a 'breather' all his life. Ye gads....

All the breathing test results came back indicating Matt has healthy lung capacity (there is a joke in there somewhere about hot air but I can't find it...). Dr. M said, as we suspected, she doesn't think this is about lung cancer (Matt just has no connections to anything that might directly lead to lung cancer - even, thank goodness, his occasional cigar!) but due to the discovery of cancer does want another CT scan in about 2 months. This will show us whether or not the spots are changing, growing which then puts us back to a place where his neck growth and lungs might be connected.

Did you know that the MN river basin and other areas here locally (Maple Grove being another specific one) do lend themselves to some kind of fungi that can impact your lungs? There is the possibility that fungus is the cause of the spots and as such they took more blood (Matt says even giving blood now is making him anxious...) and we'll get results of that test next week. But I think we understand that to be specific to the spots on the lungs only and it is not likely connected to the cancer.

Anyway, that's it for today. Probably the next post will be Monday night: we see Dr. W, our "quarterback" on Monday to get the stitches out and to follow-up on the outstanding tests, thoughts, getting second opinions, etc. etc. Stay tuned and think healthy thoughts!

Biopsy Results Back and We Meet with Radiologist/Oncologist

As of Wednesday morning, here is the status of things, this as we know that lots of you are interested and really care about what the heck is going on - bless you all!

- Matt did get his second neck pump out Tuesday so he is no longer limited by a goofy tube coming out his neck but the incision/stitches are still quite impressive! Having the tube out feels REALLY good he says.

- The throat/mouth/nose biopsies all came back negative which is good and bad. It is good as there is no obvious, lurking cancer there; it is bad as the drs are all saying the cancer in Matt's lymph node came from SOMEWHERE and we really want to know where so we can treat it specifically.

- We have requested and they are doing a second test of the infected lymph node just to be sure they really did find cancer however the radiation oncologist, Dr. H, warns us not to get our hopes up on that front.

- They have also requested a test of the node that would help us learn if by chance the cancer was caused by a form of Pap virus...I don't have the technical details on that but we should find out if that is the cause in about a week or ten days....

- We meet with a pulminologist tomorrow (Thursday morning), this as a consult to hopefully confirm that the spots in his lungs that they saw on one of the original CT scans truly are normal/of no concern (which everyone seems to think is most likely). Keep your fingers crossed.

- In about 4 weeks, he will have what is called a PET scan/test - that is another way to see where the cancer might be coming from. We can't do it until his neck is healed and the swelling is down, ergo the delay. We are currently hanging a lot of hopes on this test, for better or for worse.
- We did meet with a radiation oncologist yesterday (Dr. H, at Methodist cancer center). He was helpful on a couple of fronts: 1) was able to do the request for the doubling checking of the node, 2) also confirmed that they were testing the node for the virus, 3) gave us a couple names for some second opinions of folks at the Univ of MN as well as down at Mayo, 4) helped make clear the severity of radiation therapy which may be that which they recommend for Matt.

If they can't find the primary source of the cancer in Matt's neck/throat, etc., their normal procedure would be radiate his whole neck/throat area and the side effects are such that this is REALLY something we (me AND Matt!) don't want to have to do if at all possible. Targeted radiation (e.g. for cancer of the tonsils, tongue, etc) is different and not as involved...We'll have to see how it all plays out.

And last, 5) he shared that Matt's case has them all pretty baffled right now! He told us our primary dr (Dr. W, who has been just great) is going to present Matt's case at an upcoming conference to see if anyone has any other thoughts or suggestions. The size of the node when they took it out (it was about 5 cm x 3cm; so about 2 inches long) is one of the most concerning factors we gather - and that nothing else being seen/detected is a bit weird.

So that's it for the moment. We are still processing (and catching up on sleep!) but feel pretty good about the care to-date - and all the suggestions and support from all of YOU. Thanks and hang in there with us!

Backdrop & Beginnings

As you all know Matt underwent neck surgery last Friday. (Oct. 23). Our fab ENT doctor/surgeon, Dr. W (Matt calls him Doogie Houser and plays the theme song from that TV show every time the poor guy walks into the room. See photo of him and Matt pre-surgery.), told us he thought the growth (which appeared about 3 1/2 wks prior) would be most likely a cyst of some type, but he warned us there could be a chance that it was something else. This after 2 CTs and while watching what started out the size of a marble grow to a mass bigger than a walnut over just a couple weeks.

He told us the process would be that once they had Matt in surgery and removed the mass, they would fast-track (my words, not his) a biopsy of the growth. He thought it unlikely it was any thing to worry about, this given Matt's general health, what he could see in the CT as well as what he saw in the needle biopsy sample he took earlier but still we really didn't know and he wanted the mass out, now.

If the mass came back problematic, he would then do what is called a full neck dissection (doesn't that sound pleasant) and take out all of the lymph nodes on the right side of Matt's neck, as well as samples/biopsies from Matt's throat, tonsils, mouth, etc. etc. The surgery would take a couple hours if no issues, but if they did find something it could be longer. (A Cathy Note: Matt was in surgery for 5 hours and I was truly ready to climb the walls!!!! That was a long flipping time I thought and worried about complications...Dr. W said it just took that long 'cause he didn't have a resident to work with. Michelle - where the heck were you?! Just kidding...)

Anyway, you all know what happened next, the biopsy came back indicating there was cancer present, specifically squamous cell carcinoma - which is a form of skin cancer, and is usually localized - the best we can understand it! - to the mouth, neck, nose areas. Also it turns out the mass (we call it, affectionately, the "pomegranate" - see the photo) is actually a lymph node, not a cyst or distinct tumor per se. As such, they widened his incision and scooped out his lymph nodes on that side of his neck, plus took biopsies of his throat, tonsils, back of his nose, etc. When Matt came out of anaesthesia the worse part of it all, hands down he says, was the pain in his throat from the biopsies. He says its like having a uber case of strep throat.

He ended up with 2 neck tubes/pump thingies to help drain the wound (Madalyn thinks these are particularly lovely - NOT); one came out on Saturday but we came home on Sunday (a very happy moment!!) with the second one still in, with directions for care, etc. Also ye old handy dandy bag of drugs - antibiotics, pain meds, etc. etc. The pump was a pain in the neck, no pun intended, as we had to be sure the dogs didn't try to get too excited or try to climb into Matt's lap from the right side, etc. etc. but it worked out okay and MAN did it feel good to be home!

Before we left and actually over the time Matt was in the hospital, Dr. W was able to share more information with us and tell us about next steps. The first big next step was getting the biopsies back as they would, hopefully, tell us where the cancer is originating from. Evidently the bad lymph node indicates cancer but it is not cancerous itself per se. He also wanted us to get Matt's lungs double checked with a pulminolgist (sp?) as there had been spots indicated in Matt's lungs by one of the CT's, but he and others told us that this was not uncommon and we had not been concerned about those - until learning that the neck mass was cancerous.

The other step to locating the cancer is is doing a PET scan - which is essentially injecting Matt with some special dye, and having his body scanned. The dye fluoresces where cells are dividing/there is cellular activity and, as cancer cells tend to be busy dividing, this is another way to visually see where cancer might be present. We can't do this test, however, until Matt's neck is healed, so in about 4 weeks.

Dr. W also wanted us to see a radiologist oncologist (another ENT specialist, Dr. H), as evidently the treatment for cancer of this type and location is radiation therapy. HOPEFULLY the biopsies would help pinpoint the cancer and if and as such they would be able to treat it with very focused, targeted radiation. Otherwise, the treatment is still radiation but it would be more general - basically radiating the mouth/neck/nose area which is less than ideal. We learned more about this on Tuesday; see that post.

So, this is the "beginning" - it's a lot to take in (for us and for you I know!)...Onward and upward...We are hanging in there; frankly, getting caught up on sleep is priority. We are both exhausted.....Cathy