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.

June is Here

Well June has arrived in MN and a fabulous start to the month it has been - warm/hot, sunny...lovely!

The Matt-report of the day: happily the oxygen treatment really seems to be working on the mouth. Dr. Ha took the gauze out yesterday to see how it goes - this is the first step toward the final phase of healing so it is great news. Matt says it feels funny but not too bad...Not unexpected given he has had a hole with something stuffed in it in his mouth for over 8 weeks!

Neuropothy seems about the same - not better but not worse. Matt is still doing acupuncture so perhaps that is helping.....

Let summer begin. :-)

Neuropothy Update

Well, I started an update last week as things were getting a little worrisome for us - but am only now getting back to this blog tonight. Where did the week go? Happily news on the Matt-front is better than we thought it might be. On the other hand, its been another one of "those" weeks: I had a friend fall and fracture and dislocate her thumb (requiring surgery) AND Madalyn fell rollerblading on Sunday night and broke her wrist! (See her, Matt and friend/emergency-room-driver, Kaityln, above.) I have been in three hospitals in four days - including home-sweet-home Methodist. But Matt actually has me beat with at least one if not two dr. appointments plus the hyperbaric chamber EVERY DAY last week. Yikes. Check out Madalyn in the emergency room with her splint.

On the Matt-front: We had been getting a little anxious as while the oxygen treatments are easy, we hadn't really known if they are working and if they weren't, it spelled trouble for Matt. However Matt did see Dr. Ha yesterday and good news: the infection seems to be waning (and Matt is off antibiotics at long last!) and the hole seems to be closing up a bit.

Matt still has a-ways to go and the hyperbaric dr. is still predicting he may need a bone graft - but we are going to stay positive. Two more weeks and we'll know a little bit more about next steps. Treatment will be for at least 4 to 8 more weeks....It is definitely putting a crimp in his work day however, to say the least.

The one other chemo side effect I haven't really written about has been the growing impact neuropothy is having on Matt's activity. You will have to look up the definition yourself but it is essentially a nervous system effect, and Matt's feet and hands tingle and feel numb, on and off, all day. Kind of like having frostbite. There are some days and moments when it is actually pretty painful - almost like razor blades to the bottom of your feet or fingertips. He saw a neurologist the other day who didn't seemed to be terribly concerned but it is slowing Matt down quite a bit. It is very likely due to the Cisplatin but is predicted to wear off eventually. The frustrating piece is not knowing when it will peak (ergo how bad it is going to get) and thus when it will go away - it could be days, weeks or months. Yucko.

Matt is doing a couple different things to try to help control it, including acupuncture, vitamins, hot baths, etc. Hard to tell what works best - stay tuned! Also he has photos from the acupuncturist - we will post those this weekend....

Expert Breather @ Oxygen!

Had the consult yesterday with a dr. and team at the HCMC Hyberbaric Chamber clinic (see funny nurses - they understood Matt and his sense of humor within MINUTES of our arrival). Took a lot longer than we thought but its all good - Matt got a thorough check up, check CT looks good and in general he is in good shape, except for the darn mouth and the pesky infection.

Matt will start treatment on Thursday: every day, for an hour and a half each day, Mon - Friday, for at least 4 weeks and possibly 2 more after that. If the socket does not heal/close up Matt might still have to get a bone graft to his jaw but while the hyperbaric dr. is dubious our oral surgeon (Dr. Ha - we LUV him) is thinking positive. Keep your fingers crossed.

(Photo right: Matt contemplating the entrance to THE CHAMBER!)

More Photo Opps in our Future - Unfortunately

As a bunch of you know already: Matt continues to have trouble in toothy paradise. The darn wisdom tooth socket is not healing - which is ironic as it is the very reason he had the teeth taken out, prior to radiation. As you may or may not remember, one of the big issues with radiation is it permanently effects certain things like blood flow - which is directly linked to healing. Well, we are living that now - dang it!

As I had posted earlier, Matt had to have emergency oral surgery April 1 (whoops! wrong date posted earlier) for a deep, impacted infection in his lower jaw (site of the lower tooth extraction), and he has been going into the oral surgeons about twice a week for them to swap out the antibiotic dressing they use to keep infection at bay. (This as well as taking mega antibiotics.) When he had the teeth out back in January, he only had to have the dressings swapped out twice; unfortunately we are week six now and still the hole is not healing....He tried to go without the dressing last week from Monday to Wednesday, and in even that short amount of time without the dressing, the infection started back up. So he is back on antibiotics again and they are contemplating next steps.

He learns more later this week but it appears the first thing to do is get Matt into a hyperbaric chamber treatment program. (Something like this I think: http://mnhyperbaric.org/?gclid=CPeVusXYu6ECFQcMDQod9E5nAw). Sounds like he will do this for about 4 weeks, then there is a check-up or something, and he finishes with two more weeks in the chamber. He goes every day for about 90 minutes. The chamber helps push oxygen into the blood and in general should assist in the healing. More about that after Thursday.....If this doesn't work, its going to be about more surgery: he may then have to have a bone graft or something from his hip into his jaw - ouch! So cross your fingers for the chamber!

More later this week -