Nearing 30% Completion of the Zapping

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

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

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

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

Jan. 26: Matt Update and Cathy's Bump

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

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

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

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

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

Thursday Update: Thumbs Up?

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

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

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

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

#1 Chemo Down

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

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

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

Yes to Chemo; Radiation Treatment #2

Highlights of yesterday, today....

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

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

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

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

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

Treatment #1 (of 38) complete!

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

Radiation Begins Today and Matt is READY

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

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

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

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

Photos and Updates

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

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

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

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

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

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

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

Big Days, Big Decisions

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

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

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

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

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

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

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

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

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

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

Mayo Visit 2: Quick Update from Road

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

More details tomorrow.

Week of Jan. 3: to Mayo and Mask Fitting

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

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

More later this week!