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!