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