One Year Anniversary: The Pomegranate

Saturday, Oct. 23, 2010: was the one year anniversary of the removal of the pomegranate, and the beginning of the cancer journey - YUCKO.

In theory we should be (we are?!) so happy about where things are (no lumps, no bumps) but honestly the neuropathy has got Matt so turned around, and the fatigue has got him so down, we are really just maintaining for now.

More later towards December...PET scan to come....Bring on the holidays?!

No lumpy-bumpies!

I am doing this on the fly as we are trying to head out for a little fall-camping, but wanted to let everyone know that Matt's annual physical was good and, more importantly, the check up with Doogie was yesterday and it all looks GOOD. Evidently "soft tissues" are a good thing...and Matt has lots of soft tissue in his tonsils, etc.

Doogie was able to confirm however that Matt's thyroid is on the blink - no surprise given it was radiated and then some. This is one of the reasons he (Matt) is struggling with such deep fatigue. He will have to get a prescription to help address - but we will tackle that next week.

Probably will post a photo or two as we come to the anniversary of this blog - geez, it's already been almost one year! More later...

Sept 6, come and gone; 30th official ENT appt

Well, the fateful and exact 6-months-from-end-of-treatment has come and gone (if this cancer comes back, 80 percent of the time it comes back in the first 6 months) and no lumpy bumpies! Matt has his official ENT appointment scheduled for Sept 30 so that's when Doogie will scope him and check things out...I think he also gets scheduled for another PET scan but not right away...So some big milestones coming and going! Thanks to you, niece Whitney for sending the congrats wishes on the day- of - you are amazing!

Matt is still dealing with the neuropathy. We thought the meds (Neurontin) were working at a nice low dose but he thinks that things weren't hurting so much due to the fact we were in the car a lot (drove down last weekend to visit Chapin at KU. Best weekend EVER!). So they have bumped up the dosage 3x; I have never seen such a big bottle of pills before in my life! Hopefully this will take the edge off for awhile.

So we keep chugging away....

Enjoy September! More on the 30th.

August Update: All About Neuropathy

Not much new to report as August winds down, and September - with its all-important 6 month check up - looms: it's really just all about that pesky neuropathy.

Matt had an appointment with a new dr. last Friday, and it's official (ha!) he does have Cisplatin-induced neuropathy, duh. The good news is now that it is official he is able to get medication that will hopefully help with the pain/tingles/buzzing in his fingers, toes and joints. He started that medication the day we got back from dropping off Madalyn at college (Florida State University; we are now officially empty-nesters!) and we'll see how it goes.

They say it will take up to three weeks to kick in. It's interesting, kind of: even with all the resources available today, they really don't know much about neuropathy: exactly what causes it, how to estimate how long it will last (months vs. years vs. forever), etc.

Still also dealing with the fatigue, which of course they told us would be the case, for up to a year after treatment. So Matt just tries to nap on weekends, and maintains during the work-week...

No lumpy bumpies in the neck/throat, that we can tell - yeah. The official 6 month check up with Dr. Doogie is scheduled for later in September and will feel good to get to and beyond...Also, Matt's mouth continues to heal - the hole is getting smaller and smaller so that is a relief. What a saga the mouth deal was!

So that's 'All About Matt' for the moment. Take care all and enjoy the final days of August...

July End Update

Well, here is the end-of-July-update:

Cathy was gone for a long weekend recently (all by herself, to visit Napa Valley and bestest friends in Oregon) and Matt told me, on the way to the airport, that he thought he was going to be able to go a whole MONTH without a dr. appointment - yippee. We got all excited...However, unfortunately it is not to be. The neuropathy is getting worse and as such, Dr. Oa, our medical oncologist, wants him to see and get more tests by a neurologist, to be sure to rule anything other than that which is a side effect of the Cisplatin (which Matt is pretty sure it is). Matt has an appointment with a new neurologist next week - argh.

This neuropathy is really weird, and really sucks. Last night it was so bad Matt couldn't open the Advil bottle - which he really needed as his fingers were so painful (like a bunch of bee stings) he couldn't sleep. Ouch. It also creeps into his elbows, knees and sometimes, now, shoulder joints. We understand this is somewhat typical of a side effect of Cisplatin specifically and of chemo in general, but it sure is no fun.

Its weird; it seems like our life has been organized/unfolding by "quarters" (3 months at a time): a quarter of surgeries, a quarter of treatment, a quarter of mouth issues, and now it looks like a quarter (actually, two quarters as it started really at the end of treatment in March) and maybe even more?! of dealing with neuropathy.

Sigh. We are still taking healing thoughts; send 'em Matt's way?!

A July update: 1 doctor down; 18 to go

We just returned from our summer vacation (camping/RVing on the south shores of Lake Superior) with lots of much needed sleep and relaxing for both of us. I reminded Matt, when we were wondering if we should feel guilty for sleeping in so much, that if our bodies didn't need it - we wouldn't be still sleeping at 10am in the morning. :-) This was one of the longest stretches without dr. appointments, for Matt, since October 2009 -yeow.

With this being said, since our return Matt has had a bunch of follow-up appointments, and happily things are finally looking really good (KNOCK ON WOOD). In a nutshell:
- saw Dr. Oa, his oncologist and while his hemoglobin is still low (from the chemo) he does not need to see her again, she says - yeah. So, medical oncology: COMPLETE.
- saw Dr. Ha, oral surgeon, and the "hole" in Matt's mouth is officially healing all by itself and looks good. Thank goodness. (Matt's final hyperbaric treatment was the Friday before we left.) His appointment included getting a CT scan of Matt's head to look for bone lesions, infection, tumors and it all looks nice and clear.
- Matt had his July PET scan and we already heard back from Dr. Doogie: it too is looking clear. Phew. Now, just another couple months (Sept will be the 6 months point which is big for this cancer).

The only thing that is still a bit up in the air is whether or not Matt should get a couple more weeks of oxygen therapy. We think it is helping Matt's fatigue factor (which is still pretty extreme - a combination of recoup from chemo/radiation as well as the low hemoglobin), and he is still hourly at work, so it wouldn't be the end of the world...However we are girding our loins to battle with insurance around this treatment as it is not covering all costs (and be forewarned: hyperbaric is nearly as expensive as radiation!!).

Other than all of this...the neuropathy is still present and pesky, but time will tell...Just slowly getting back to normal?!

Today is Matt's final day of hyperbaric chamber/oxygen treatment! And here is hoping the healing continues - this as we leave for our summer vacation (camping on the shores of Lake Superior, whee!). Currently, the oral surgeon is voting "no" for surgery (bone graft) but the hyperbaric dr. is still on the fence....So the hope is that upon our return, Matt's hole has closed up just a bit more (it's still there with anitbiotic gauze stuffed in it - but less gauze than ever before) and we just have to be patient and let it keep doing its thing at its own pace. Keep your fingers crossed...

Also, today Matt has his mid-summer PET scan which is kind of a big deal - feeling pretty good about that too but we shall see.

Party at our house tonight to celebrate Mam's 18th birthday and graduation - what fun...

Happy summer to all.