Thursday, March 26, 2009

Another Milestone Reached

Mike had his last double radiation treatment today. The "double" days always gave us the most challenge in terms of logistics and Mike's pain management, so we are doubly (couldn't help it) glad to scratch the last one off the appointment list. Only 6 more radiation treatments to go, which is the next sigificant milestone.

The daily IV infusions will continue for the next few weeks, and are already proving to be worth the extra time at the hosptial every M-F. Mike's energy level and appetite have improved with this, and his weight is up about 5 pounds since this started just a few days ago.

We're looking forward to Mike's brother, Jim, coming this weekend. Mike would be looking forward to it a whole lot more if Xavier had managed to beat Pitt in the NCAA game tonight. Mike picked Xavier (get it--X, X-ray[radiation]) to win it all and to not have to root for a Big East team in his bracket.

Our hope is that Mike can get the rest he needs this weekend to give him a boost for the last week of radiation and third chemo coming up. What better way to do that than watching the NCAAs at home on a beautiful spring weekend in Atlanta.

mike and terry

Tuesday, March 24, 2009

From "Hanging in" to "Hanging On" -- Crank Up the Good Vibes Again

The most recent post painted an honest picture of Mike's condition at that time--one of cautious optimism. That picture has changed considerably in just the last 3 days. Try as we might, we are not able to keep his nutrition and hydration levels where they need to be. We were back in the hospital today for more IV fluids and will get a re-assessment of his progress from the oncologists tomorrow.

The whole trick to this is to find a balancing point among a number of vital indicators (pain, weight, hydration, nutrition, sleep, medications) that will allow him to continue the treatments without those same treatments doing additional damage to his body. That balancing point needs to be found soon, and then be maintained for another 2-4 weeks. At that time he will have started to see a turnaround in the radiation and chemo side effects.

Mike continues to be in that Zone of a Fighting Chance, so not to worry that way. However, that zone has turned out to be a moving target and the last few days have been very difficult.

So, crank up your Good Vibes machines once more and keep them going 24/7. Hopefully the next post you read can reflect a return to some cautious optimism.

mike and terry

Friday, March 20, 2009

Four Weeks Down This Road

Mike completed his fourth week of radiation treatments this morning, and had his second chemo infusion this past Monday. So, he's now two-thirds of the way through his treatments, followed by another 4-6 weeks of follow-up and testing. Given the wide range of progress he could be experiencing right now, he's extremely pleased to be where he is--responding to the daily meals (such as they are), gaining back a few pounds of weight, and having only minor nausea from this last chemo infusion. Still hard to say how much more scalp hair he might lose.

It looks like he's now ready to be a bit more active with some short walks, so hopefully the weather will cooperate for that over the weekend.

Please stay in touch via the blog and your private emails and we'll keep posting as things move along. For right now, we and the docs appear to be in a state of holding on to some signs of cautious optimism.

mike and terry

Wednesday, March 18, 2009

More Encouraging News from the Radiation Oncologist

In our weekly consult with the radiation oncologist this morning, he told us that while he can't actually see the tumor in the X-ray pictures they take every day, he does see some signs that it's shrinking. Mike's overall level of pain has lowered a bit in that area, which would confirm that observation.

He also said that Mike's side effects are well within the range of expectations at this stage of treatment. As always, with the qualifying "So far..."

mike and terry

Tuesday, March 17, 2009

The Good Vibes are Working! Keep 'em Coming

Yesterday's chemo infusion was just what it should have been--a long IV session with no problems. Some people (ourselves included before this) have the impression that the chemo infusion itself is a big deal, and mostly of the painful kind. In reality, it's very low key. Mike just sits there with an IV tube, waiting for a series of 4 bags of fluid to empty into his arm. The most difficult part is figuring out how to use the time while tethered to the IV stand for 5 hours and sitting in a very comfortable recliner with all sorts of reading and listening material, and Terry, around him.

(If you guessed 'sleep' for Mike, you win!)

About 30+ hours after the infusion, we are happy to report that Mike is doing extremely well (things can change, so we'll only say 'so far' this one time). The anti-nausea drugs are working well, with no reaction to the food he ingests through the tube. One of those drugs does produce a minor hiccupping side effect, but that will go away in the next 24-48 hours. It also goes away when he's in a sleeping position, so it doesn't interrupt that need.

He is feeling a lot of fatigue, but that should diminish as more time elapses from the infusion.

And, for the BIG question on all of your minds "Is he losing his hair?" Sorta kinda, but not from the chemo. Last week he began to notice a little more than the usual amount of hair gathering at the shower drain each morning. That amount increases a bit every day now. The docs say it's more likely from the radiation than the chemo--since it's coming out in the lower back of his scalp line--where the radiation is most concentrated. And fortunately, where his hair is the thickest--so we are calling this a "thinning", not a "falling out" event. Whatever it is, there's no way to tell if this same pattern will continue. We do have Jerry, Mike's barber, on alert for the "ultimate buzz cut" if needed. We are told that the hair will grow back, slowly, once the radiation treatments stop.

Of a more daily concern now is Mike's loss of voice--again from the radiation. He can talk, but his words come out slowly and slurred (picture a 3-Jack slur for him), and it is quite painful. So, we have him on as-available plan for talking. Your calls are important to him, so please continue to call his cell. But you will likely find Terry on the other end. She'll let you know if he's: 1) awake, and 2) up to a conversation.

So, your collective good vibes for this week are working! Please keep the extra ones coming for the next 2-3 days. We should know the full story about side effects from this round of chemo then. After that, we'll just see what comes next!

mike and terry

Friday, March 13, 2009

Good Vibes Alert for Next Week

I have my second chemo infusion on Monday. While the infusion is not difficult, what happens over the next 3-4 days from there will tell a big story in what I can expect in my levels of pain and discomfort over the second half of the treatment schedule.

Please send some extra good vibes our way next week, and we'll be sure to provide updates from this end.

mike

Half Way through Teatments -- Sorta Kinda

Mike had his 18th radiation treatment this morning, which puts him halfway through the treatment timetable, sorta kinda. While the number of radiation treatments are half over, he still has his second and third chemo infusions ahead of him, and the cumulative effects from both kinds of treatments will make the second half much more difficult than the first half.

On a very positive note, the feeding tube is doing just what it's supposed to--letting Mike stay hydrated and nourished at healthy levels. We now have a good routine going with that 4x/day procedure, and it comes and goes by quickly each time. Terry gets to re-visit her high school chemistry lab skills, while Mike gets to play the large beaker. (It'll come to you, just wait).

A special thanks to Paul Schempp who subbed as Mike's driver all day Thursday. Terry really appreciated the break, and Mike appreciated having some extended time with Paul.

So, he'll get as much rest as he can this weekend and take his next chemo infusion on Monday. The 3 or 4 days after that will reveal whether he really is "over the hump" or still facing a long road ahead for the second half of the treatment schedule.

As always, the blog remains a constant reminder of how many people love us and support us as we go through this--so be sure to log on and post every chance you get.

mike and terry

Thursday, March 12, 2009

Looking forward to tomorrow...

Much love to Paul who took over the driving duties today--double radiation trip to Piedmont, allowing me to have a normal workday in the schools supervising interns.

I can't believe that tomorrow morning will mark radiation(prairie dog slaying) halfway point #18.

Looking forward to a weekend on the deck.

Wednesday, March 11, 2009

Staying in the Zone of a "Fighting Chance"

Even with the best doctors, technology, and the support of family and friends, one of the gnawing realities of being a cancer patient is that no one can predict the outcome with an acceptable level of certainty--at least to the patient, and even moreso to a data-driven patient like myself

I think that this level of uncertainty is what makes cancer patients so highly compliant with their doctor's requests, and to become so willling to endure treatments that are usually far more toxic and painful than the disease is at that point in time. At some point the patient starts to say: I hope I can get through the chemo or the radiation--as if this was not really a battle against cancer.

While nervously contemplating the third attempt to insert the feeding tube, I managed to fall out of a zone that would have maintained a "fighting chance" in my mind for not only surviving this, but also getting back to the full range of things that have meaning in my life, and seeing a few of my dreams with Terry come true.

Leading up to the tube insertion it became clear that little piece of simple technology was going to keep me in the Zone of having a Fighting Chance. Without it, I saw no chance of making it through. The tube was not the proverbial Silver Bullett, but it did allow me to get back to a physical, emotional and physchological place that could gave me a shot at beating my cancer.

In that hazy post-op world, I overheard the lead anestesiologist comment that mine was the most difficult itubation (instertion of the breathing tube) he has ever done. The other doctor said something like, "Well, the guy on the table fought off more pain than I've ever seen, as well."

There is a cliche in sports that players and coaches will say something like: "I just want to play well enough throughout the game to have a chance to win at the end"

I need to have the same mindset--to do everything I can on a daily basis so that the game doesn't slip out of reach.

mike

Tuesday, March 10, 2009

24 hour admission

March 10, 10:00pm

We're beginning to understand that when a doctor says we will do a "24 hour admit" that means exactly 24 hours. Go figure!

Mike and Terry were released from the hospital shortly after the previous post. We are both recovering nicely at home and looking forward to radiation treatment #15 tomorrow morning.

Goodnight,

Terry & Mike

Twiddling our Thumbs

March 10 - 11:00am

After a restful and uneventful evening, all hopes of being home by noon are fading fast. The plan is to make sure that Mike is adjusting to the feeding tube and everything that is needed at home is in place before he gets discharged this afternoon. A case worker is helping to coordinate any additional medical equipment that is needed at home.

We've discovered that absolutely nothing stops the "prairie dog" slaying train ride. Radiation continued as planned this morning.

The excellent care that we've received so far at Piedmont has been duplicated with this overnight stay.

We really enjoy the funny posts, so keep the one-liners flowing. We can feel the good vibes, love and prayers making a difference.

Terry & Mike

Tuesday, March 10

Font sizeThe Big Waiting Game



It's 1010am, Tuesday and any hopes of being home by noon are fading fast. Mike had radiation as previsouly scheduled this morning. We've discovered tha absolutely nothing stops that train ride.



The plan for the rest of this morning and early afternoon is to make sure that the tube feeding is going well and we have everything in place at home for me to continue his care. Once again, we've had nothing but excellent care from everyone.



Monday, March 9, 2009

Tube Inserted--Difficult Procedure

The feeding tube was inserted, but not without some great skill by the doctors and great pain for Mike.

Mike has been admitted overnight to the hospital.

More on a later blog.

mike

Sunday, March 8, 2009

Need Some Extra Good Vibes on Monday

Please send along some extra good vibes, prayers, wishes, etc, to Mike tomorrow. He'll have his third try at the feeding tube insertion in the morning, and really needs it to be successful this time.

He might be admitted to the hospital tomorrow night, so we'll get the next blog out ASAP after we know the results and get back home.

mike and terry

Friday, March 6, 2009

Reaching another Milestone

Today (Friday 3/6) ended the second full week of radiation treatments for Mike, putting one-third of those treatments behind him. And, better yet, nearly 72 hours off until the next one.

The doc's predictions have been pretty accurate so far--the tumor appears to be shrinking ever so slightly, and the swelling from the radiation is starting to become a factor--as a speech/swallowing impediment and a source of pain. All of that puts Mike right on course and also allows us to plan better for what's ahead, instead of simply reacting to 'it' each day.

We enjoyed a great lunch visit today from Mike's sister, Marie, who managed to recreate two of their mother's best pudding recipes that really hit the spot after the 'necessary' part of Mike's lunch was ingested.

We are hoping to enjoy a quiet weekend with the first real bout of spring weather here--getting in some walks, doing some reading...and scarfing the rest of that pudding.

Mike would like to send out a special thanks to some Tufts fraternity brothers, childhood friends, and others who have shown that those kinds of ties run long and deep in people's lives and that the dividends to be earned from those friendships have no expiration dates.

mike and terry

Wednesday, March 4, 2009

Feeding Tube Delay

When Mike had the procedure that included the biopsies, it was noted that his airway was already restricted at that time. Since then it has become even a bit more restricted (due to the swelling from the radiation), so the docs today decided not to install the feeding tube as an out-patient procedure, and use a full operating room instead. The OR is better equipped to handle this situtation, and any complications that might arise.

The tube will be installed on Monday. The good news is that Mike got a couple bags of fluids in him while waiting today--and that he's not terribly uncomfortable at this time with chewing or swallowing--so this delay is not as worrisome as it might have been 3-4 days ago.

But, one milestone achieved nonetheless. This was Mike's 9th radiation treatment, putting him 25% down that road. He's half-way to half-way!

mike and terry

Still working on 'Comments'

The settings for sending comments have been adjusted again--hopefully they are now all corrected. Please keep tyring to send comment so I can know if this has been fixed.

Mike

Tuesday, March 3, 2009

Santa Claus in the radiation oncology treatment room

When I arrive for daily radiation treatments, I sign in and immediately go to a waiting room for patients who are on the treatment schedule in that same time period. As you might imagine, it's not the cheeriest of places, and the only thing that brings us all together in that place is our disease, treatment plans, and a schedule that finds us in the same place at the same time on particular days. I see some people almost every day, but others come and go through that room in an unpredictable manner.

Well, today was certainly not a typical day. I arrived to find an iconic vision of a Santa Claus sitting there, waiting for his first treatment. He was not in his suit, and his hair was unseasonably short (Summer's can get hot at the North Pole), but it was him, all right. So, in this room that provides not a single reason to laugh or smile, he told us that he's been doing this for many years in North Georgia, and is already making his plans for Christmas 2009. And, that's the key to all of this--getting through the treatments, etc, so we can return to the things that gave our lives meaning and happiness before we became cancer patients and caregivers.

"Once in a while you can get shown the light
In the strangest of places...If you look at it right"

mike

Sunday, March 1, 2009

Week 2 coming up

Thanks to all of you who have posted to the blog--please know that it is a vital link in the process, and that we both look forward to reading what you send along.

What started as a mostly uneventful first week of treatment ended with Mike in the Emergency Room, getting treated for severe dehydration and constipation. We are glad to report that both sets of symptons have been reduced, but it was two days of very high levels of discomfort for him. He had a very good day today, getting his fluid levels replenished, and eating the best grilled cheese sandwhich he can ever remember.

The dehydration from the chemo and radiation came on faster than was expected, so first thing tomorrow we'll ask the docs to move up the installation of the feeding tube to be ASAP. He'll be able to directly take food (as it were) and fluids into the tube, which will allow him to maintain good levels without having to think about how yucky the food and water tastes.

So, Week 2 coming up--with radiation treatments only--no chemo. We'll see what that holds.

mike and terry

Week 2 of prairie dog slaying: As Mike reported earlier, the weekend started rough, but ended good with him being able to eat and drink a little. It's still not enough, but it really boosted my spirits to see more fluids going into him yesterday and today. We also found out this morning that the procedure for the insertion of the feeding tube has been moved up from Friday to this Wednesday. Never thought in a million years that this is something I would be happy about, but I'm actually doing cartwheels.

Thanks to everyone for the posts, phone calls, personal e-mails and cards. Also, a special thanks to Aleisa for stopping by this evening. We really enjoyed hearing about your trip back home to Arkansas. It makes the rest of us seem sane. (;)

On another note, we both found out today how important it is for everyone who is involved in Mike's care to be positive. Keep the positive thoughts flowing.

Terry

Week two of prairie dog slaying has begun. As Mike reported earlier, the weekend started rough, but ended yesterday with him being able to drink and eat more than he has eaten in awhile, which has really helped boost our spirits. We also found out today that the procedure for the feeding tube has been moved from Friday to this Wednesday. As unpleasant as this may seem, we are both ready for this to happen. Stabilizing the weight loss with adequate nutrition and hydration is extremely important has he continues with radiation this week. Thanks again to everyone for all the posts, the cards and personal e-mails. A special thanks to Aleisa for stopping by this evening on your way home--we both enjoyed your visit.