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!