The Road to Indiana A Fork in the Road...

Back home in Maine!!!!

2010-10-15T21:47:00.002-04:00

Before I left for Boston a few weeks ago, Vivian and I practiced the "mask game". Now that I'm back home, practice will make perfect!

It's great to be back home with Tom and Ivan. They did pretty well on their own, but clearly happy to have some relief in the kitchen.

From this point on, I'll have weekly visits (each Monday) to Boston for lab work and careful monitoring of the graft progress. Though I feel great, the reality check is in the very limited "indoor" visitation (immediate family only for three months). I can go outside with others, which is a great motivation to keep up daily exercise and walks! No take out food, no restaurants, no grocery shopping or entry in any other public places for several months. No fresh fruit or veggies, all meat must be well done (no steaks for a while), no fresh herbs or spices. Overall, a pretty good trade for heading towards a cure. I'm not complaining.

I'm signing off updates for awhile. There shouldn't be much news to share over the next couple of months; hopefully, just continued weekly visits and continued progress towards a full and successful graft. So once again, thanks to all for your cards, calls and good wishes. jvm

Weekly update.

2010-10-11T08:57:00.003-04:00

Another week has flown by and it's been quite uneventful in a good way.

Blood counts continue to do what they should, plunging last week with a turnaround point on Saturday, starting the upward climb.

At the low point (Saturday) I did receive some platelets and a blood transfusion which is customary.

I "kept calm and carried on" when the other shoe dropped last Friday. My hair literally "showered off". It was very strange and surreal. Although I had been waiting for the day, I hadn't visualized just how it would occur. Loren took the scissors to it and turned what looked like a wolf with mange, into a neat very, very close crew cut. I won't be posting any pictures of that, though I did send one to Vivian and Jonah so they wouldn't be suprised or scared (it is scary) when I return to Portland. Vivian wouldn't talk about it with me, though she told Gilda that I look like Grampy, and old, too! You know what they say, "if you want the truth, ask a kid". Needless to say, I'm making good use of some new hats.

Tuesday is my next clinic appointment and I should hear then if I'm cleared to go home this week. I'm guessing that I'll have a second appointment on Thursday, and then maybe just one a week after that. We'll see. It would be nice to get back to Maine, Tom, Ivan and family, though my stay here with Loren and Joe has been fun.

Still taking daily walks and loving the weather. It's held in the high 60's all along. Today is expected to hit 70 again.

Columbus day is a big holiday here in Massachusetts; parades, school out, lots of businesses closed. If you're lucky enough to be off - enjoy the end of the long weekend! Continued thanks for keeping in touch. jvm

Start of a new week.

2010-10-05T11:38:00.005-04:00

Appointment at the clinic yesterday included the last of 3 infusions (to enhance graft process) and confirmation that my blood levels are exactly where they should be.

I learned that the graft process really kicks in around the 10th day post transfer. Up to that point, they take a nose dive, and then when the new cells start to take over (graft) the counts begin to climb back up.

It is typical to receive a blood transfusion at the time of the 3rd infusion (due to low platelet count), though my doctor opted against it because of my good progress, no fever, and overall good health. I take that as a good sign.

As for the coming days, I'm told to expect some serious fatigue and perhaps some general malaise as the new cells really get to work moving in. Given my experience so far, it's hard to believe it. I've been very fortunate. I go back for another check-in on Thursday.

Meanwhile, I'm taking a daily walk and enjoying my stay with Loren and Joe. I pitch in by doing anything on the clean side, like unloading the dishwasher, and they do everything on the other side, like loading the dirty dishes. I'm learning how to receive help, and Loren is learning how to pare down her doting . We both require remedial training now and then. It's genetic.

More next week. Thanks again for your calls, cards and e-mails. jvm

PS: Mike completeded the 100 mile Dempsey Challenge on Sunday and, thanks to many, he raised over $3600.00!

Cards, gifts and calls. Thank you!

2010-10-02T13:25:00.009-04:00

Leaving the hospital

2010-09-30T22:49:00.001-04:00

Today was a big day for JVM, she is out of the hospital and home with Joe and I and the pugs. She was released at about 1PM or so. We made one quick pit stop on our way home from the hospital and that was to Starbucks for a pound of coffee. I guess the coffee at the hospital was AWFUL so we needed to satisfy her coffee jones.

Because of the SCT (Stem Cell Transplant) she can't order her coffee premade from Starbucks. I think it will be at least 6 months before she can eat any food that isn't prepared at home. As soon as we got home, she immediately went into unpack & organize mode while I made her some coffee.

It's hard to keep a good woman down . . . she keeps trying to pick up or set the table, or wash a dish. She's the energizer bunny. I just don't get it. Where does she get her energy? If I had to guess, I'd say today she's jacked-up on being out of the hospital and maybe tomorrow she will settle down and start to relax and recover. Either way relaxed or hyper, I'm very happy that she is home from the hospital.

Keeping Grampie Company

2010-09-30T22:14:00.001-04:00

Tom and Ivan the Terrier have had a lot of nice visitors over the past 7 days. Mike and Gilda and the kids visited Tom on Monday night. The word on the street is that Gilda made a delicious meatloaf for dinner. Here is a picture from their visit.

On Wednesday night, Ben and Naila and Nora Grace made dinner for Tom. Sadly, I don't have a picture from Wednesday night. Just trust me when I tell you that Nora Grace is as cute as a button!

Moving right along

2010-09-29T21:24:00.000-04:00

JVM had her SCT (Stem Cell Transplant) last night. The cells from the donor landed at Logan Airport at about 8PM local time. They were sent to the lab and by 12:30AM they were making their way through Mom's veins. Today I visited for a couple of hours. We met with a nutritionist who explained how shop for and prepare food for the next 100 days or so. No restaurants, no takeout, no fresh salads or raw anything. Fortunately there are still some really good foods on her "OK" list so she won't suffer for long!

The last few days have seemed to pass by without much to report. She made it through 4 days of vigorous chemo with flying colors. Today she's starting to feel the effects of all of the chemo. She has what she calls "chemo brain" which I think means a foggy brain that can be hard to focus at times. Today I would describe her as sleepy and queazy but very excited to be getting out of the hospital tomorrow. Joe and I have been preparing for her return, we can't wait to have her home with us for the next couple of weeks. Tom and Ivan will be coming down on Saturday for a visit, she can't wait to see her boys.

Milestones - past, present, future:

2010-09-28T11:36:00.018-04:00

Looking back, the time has flown since last Wednesday. Looking ahead, it creeps , so I try not to do it. Mileposts along the way mark the conclusion of chemo (Sunday night), a day of no treatment (Monday), and today, the stem cell transplant, which will likely occur towards evening.

The transplant is pretty anti-climatic. It's delivered through an IV just like the medicines and won't take more than half an hour to complete. It's been interesting to hear the many assumptions about the mechanics of a transplant . I've heard - operation, procedure, surgery, etc., some speculation getting very creative. I won't share them all, but the winner is: "They cut a small incision in the back of your neck and pour the new cells directly into a hole at the top of your spine that has been made just for this purpose." Thankfully, that only happens in horror movies.

Tonight through Thursday will be for monitoring the graft process. On Thursday, assuming all goes well, I'll be released to Loren's care where I'll spend a couple of weeks in W. Medford. (Meffedd if you're from Bahston).

Gilda and Mike visited this afternoon, and I was allowed to go outside for a walk around the courtyard with them. The rain had stopped so it was a good treat. No fresh air again now until Thursday. My brain is caffeine free (going cold turkey from Starbucks has been the worst of anything from my perspective) and therefore not firing very quickly. Had I thought of taking their picture with the masks and gloves on , I could have posted it for you. Most would look funny, but they looked pretty cute. The nurses have provided some small masks with happy faces for Vivian, Jonah and Nora Grace to "play with" once I get home.

Meanwhile, the extended Monaghan family is holding the fort in Maine. I think Tom has fixed everything that needs to be fixed around the house! Soon, he'll just have me to fix. More updates as they come. Thanks for all the "check-ins." jvm

September 22, 2010. The Road to Boston.

2010-09-23T14:37:00.006-04:00

Competing with the Fenway Park crowd was a challenge, but it pays to have official Massachusetts's drivers in the family. With Loren's skillful inner-city driving, Joe's co-piloting and my blindfold we arrived exactly on schedule at 7 pm with a normal heart rate. (Oh, did I forget to mention that we traveled from Maine to Boston via Nordstroms?) Never miss an opportunity!

Pretty fancy admissions office. Beautiful artwork by a local fashion illustrator. Last minute call to Tom with microwave instructions, before moving in, and up/4th floor. (Wed. evening)

(Thursday) There won't be much to comment on for a few days ahead - four days of treatment prior to getting the new cells on Tuesday. Before getting started on the treatment, I was permitted to go up two floors to visit a friend (Cindy - for you Hannaford folks) who will be going home today after the same transplant procedure - and doing well, I'm happy to say. Enjoy this great Indian Summer. I do have a good view of it from the 4th floor window.

It's a date!

2010-09-23T14:31:00.004-04:00

Pre-admission visit to Dana Farber confirmed 9/22 as check-in day. Loren, Janise & Mike take a Starbuck's break between appointments. It's official. More next week.

A fork in the road...

2010-08-17T18:20:00.006-04:00

Quite some time has passed since our last post.

Mike has had many check ups and each has resulted a clean bill of health. Nonetheless, the days and weeks preceding each check up are filled with anxiety. What if the CAT scan shows something? Will the lab results be "within normal limits"? After Mike visits Mercy Oncology and the staff, that became in many ways a family to us, with the positive results we are able to breath a bit more easily.

Vivian has changed from a toddler to a big kid. She constantly challenges and amuses us. She wants to be a doctor like her biba and Daddy's "Dr. Ketchup". She has a very strong personality and is a joy to be around (most of the time).

Jonah is a BIG boy. He is possibly the funniest and sweetest kid around. He is so much like Mike it is scary. At this very moment he is sitting in the middle of the dinning room table. There is no amount of child proofing that would inhibit the little dare devil.

I have been enjoying every minute watching my family grow. Each day I am amazed at what I see. I cannot believe that my parents raised 6 kids. Where did the energy come from?

That brings me to the last member of the journey to Indiana, Janise. Janise, as always, never stops. She is an amazing grandmother, and person. When Vivian and Jonah are with her, and I suspect often when they are not, she is coming up with new ways to entertain them. She is very hands on, running through the sprinkler, letting them "cook", bringing them to the playground and Tom's favorite sleepovers with trips to Beal's for ice cream!

Janise has been undergoing treatment for Chronic lymphocytic leukemia (also called CLL). According to WebMD, CLL is a blood and bone marrow disease that usually gets worse slowly. CLL is the second most common type of leukemia in adults. Although she was diagnosed prior to my arrival in the Bryand/Monaghan family because of the slow progression Janise had her first official treatment not long before Vivian was born. She took a pill form of chemo over a long period of time. The results were good and she went in to a remission period. In December of 2009 the decision to restart treatment was made. Protocols had changed since her first treatment so this time the treatment would be intravenously through infusions. Janise was outfitted with a Mediport and was off to MMC for in patient infusion chemotherapy. The plan was to have monthly infusions on an out patient basis. Over the course of the last eight months Janise's levels have been off, which has not allowed her to be treated as the original plan was written. A few weeks ago Janise and Tom headed to Dana Farber to meet with her consulting physicians as she has done many times throughout the last several years.

The result of that trip is the fork in the road. In a few weeks Janise will have a stem cell transplant. She will receive donor stem cells at Dana Farber and will be there on an in patient basis for 8 or 9 days. Since this blog served our family so well getting information to our friends and family as we travelled to Indiana for Mike's surgery Janise will be using it to keep everyone posted on this next journey.

2008-07-16T11:14:00.003-04:00

Lots of pictures....

IU has a Park dedicated to Cancer Survivors. Our last stop in Indianapolis was to visit the park. We drove by it on our first day and it was a perfect ending to our trip.

Cancer Survivors Park

Home

Some pictures of our trip home...

We were greeted at home by our nephews Kerry and Louie and nieces Mia, Evelyn and Chiara. Along with my parents and sisters Carla and Marianna. The kids had decorated our house with a multitude of welcome signs. Some are pictured in the slideshow below.

The road to Maine

2008-07-15T21:24:00.003-04:00

Last evening as we were trying to get home Mike joked that we should rename the blog "Road to Maine." Maybe that was not such a bad idea. We are home! It is actually fitting that our homecoming is today. It was five years ago today that we started calling this house our home. As we walked through the door today the meaning of home has changed somewhat - at least for me. Believe me, I am fully aware of how corny what I am about to write is, but, my home is anywhere Mike, Vivian and Jonah are. I am so relieved that we all walked through the door healthy. Granted Mike is still recovering but we now know what we have believed all along, he will recover fully. He feels well, tired, as am I from the travels, but, well.

Now a few words about our travels today...

We woke in Atlanta, showered, put the same clothes as yesterday on and were off to the airport. Back through security where both Janise and Vivian were selected for advance screening. Yes this is correct- Vivian at 19 months was selected for advance screening. She again went into the air machine with her Grammie and after that was frisked. The TSA officer told her he was tickling her, but, in reality she was frisked. He did let her come through the rest of the way with me while Grammie got "tickled." We then hung out in the airport for a few hours with lunch, coffees and ice cream compliments of our meal vouchers. Vivian and Jonah took naps. A few hours later we were in the air. Both kids did great again. We were so lucky both ways. The flight was quick and we were home in no time.

My sister Carla came to the airport to pick us up and brought a surprise for Vivian. The surprise was a million times better than the Children's Museum. Carla brought my nephew Louie with her. The greeting they gave to each other was better than any Hollywood screenwriter could ever come up with. It was very touching to see them. Vivian then went off to Louie's to play while Mike and I settled in.

As i write tonight my family are all snug in their beds for our first night back at our house. I will update tomorrow with some pictures after we unpack.

Homeward bound

2008-07-15T21:21:00.002-04:00

Written 07-14-2008

Greetings from Atlanta, GA at 11:26 p.m. Monday July 14. We decided to try to get back to Maine a.s.a.p. We had been trying to change our flights and ended up getting one-way tickets home for less money than switching our original flight. We checked out of our home “suite” home and were off to the airport. Mike and Janise were selected for advanced screening. They guy with 32 staples walking hunched over looks threatening. Note to all -- this means that Vivian also had to be screened because Jonah, one stroller, my carry on, Vivian’s car seat and Vivian’s carry on were all I could handle. Luckily the TSA agent helped me with all the stuff and he made Vivian feel comfortable with the big air machine she had to go into. We arrived at our gate to find our 5:20 flight was set to leave at 6:13 then 6:45 then 7:10 hmm… weren’t we supposed to arrive in Atlanta at 6:59? At any rate we arrived in ATL and our plane to PWM was still at the airport. Unfortunately for us the departing gate was changed from the next gate over to the next concourse over with no hope of making it. Oh well, life is an adventure. We are all healthy and happy and Atlanta is as good a place as any to be stuck in. We left the airport with hotel and meal vouchers in hand (again note -- no luggage.) and are awaiting our departure tomorrow. Our hotel does not have wifi so for you all when I say today that means yesterday and tomorrow means today.

I would gladly be stuck anywhere with Mike CANCER FREE.

Saturday

2008-07-12T18:50:00.009-04:00

The theme of today was to relax (Mike) and to have some fun (the rest of us). Before I tell you about what the rest of us did today, here is the latest on Mike.

Mike is doing well, but as you can imagine he is very sore and at times pretty uncomfortable. He has been doing a very good job of resting and relaxing. I just asked Mike to describe how he is feeling today, and this is what he had to say. "At times I feel like I've been hit by a bus, then other times a rabbit, a VW Rabbit."

So there you have it!

Gilda and I took Vivian shopping this morning, and Mike and Grammie Janise stayed behind with little Jonah. When we returned we found the two Bryand men napping. Sadly, the naps didn't last too long but both Mike and Jonah seemed happy to see us!

After Vivian's afternoon nap, Grammie Janise and I took Vivian to the Children's Museum while Gilda, Mike and Jonah stayed behind to rest. The museum was great and Vivian seemed very pleased to revisit her favorite exhibits from last week. In case you were wondering . . . Vivian's favorite exhibits are the Water Table and the Curious George Room.

Here is a video from this afternoon at the museum.

And finally here is a video of sweet little Jonah shot tonight, just before I started to write this entry.

That is all the news from Indianapolis tonight.

LLB

Home suite home

2008-07-11T19:56:00.007-04:00

Off to the pool!

Vivian says two thumbs up!

Jonah says goo goo ga ga

Hooray! Mike was released from the hospital today! We are so happy that he is back with us. He is doing well and trying to keep the pain at bay. We are certainly looking forward to going home. It will be so much nicer for him to recouperate at home.

Loren arrived this morning. It is great to have her here. Vivian is excited because she has a fresh playmate. I think she has been growing tired of Janise and I.

Mike has been doing quite a bit of walking and came down to the pool with Vivian, Loren, Jonah and I. Unfortunately the pool area has no shade at all. It is pretty hot today and he can not go in the water so he was not able to stay down there too long.

Mike's surgeon expects that he will recover nicely. He did say some days will be better than others. He said it may take a while for him to get back to normal. His nights and days may be reversed; he could be really hungry and take a bite of food and not want to eat more; etc. Mike is taking that in stride. It can't be worse than chemo.

There are many strange things that happen when going through an experience like this. One thing is the relationship that is formed with caregivers. Mike has been so fortunate with the nurses Rachel, Rochelle and Lisa along with Dr. Foster here and with Carolyn, Dr. Ketchum and the entire staff at Mercy Oncology. It is difficult in some ways to leave them, they are amazing people. We are both so luck to have had them all in our lives.

We would also like to express our continued appreciation to all of you for your support.
GCB

We are celebrating in Indy!

2008-07-10T22:08:00.007-04:00

BEFORE

AFTER

We got good news today!

The pathology of the mass came back and it was a low grade teratoma. This means no more chemo. Mike is cancer free!!! We are very excited and relieved by this news. Mike had a better day today. He was disconnected from all of the various tubes and walked around and sat up quite a bit. He no longer has the morphine pump. He will be released from the hospital tomorrow. He was walking the halls this evening and ran into his team of doctors. They told him it is very unusual for them to see a patient walking around themselves so soon after surgery and jokingly said "maybe you should be released tonight..."

We could not be happier. We will still be here in Indiana a few more days. It will be nice to have Mike in the hotel and I hope we can keep him comfortable there.

His nursing staff was amazing. Rachel, Rochelle and Lisa made Mike feel as comfortable as possible. They all were wonderful and took Mike’s teasing humor in stride. We could not have asked for a better experience (says the woman who was not sliced open).

He has 32 staples and they are very neat. Hopefully no one is squeamish because if you are reading this you are seeing them.
GCB

Greetings from room 6676

2008-07-09T20:16:00.002-04:00

Hello to all. I am writing this evening from Mikey's room. He is sleeping now but had a rough night last night and today was no picnic.

His activity goal for the day was to sit in a chair and the doctors would like him to cough. Sounds pretty easy right? Not so. He is very uncomfortable and sitting up was challenging. He has had three sessions of sitting up each 30 to 45 minutes long and from the look on his face while sitting, 5 minutes would be more than enough for him. The thought of coughing is absurd to him at this point. He has a breathing exercise that he needs to do every hour which he is treating as a test and trying to score higher each time. He has been in alot of pain today. The doctor ordered an anti inflammatory called toradol (spelling) which helped quite a bit but he can not have it very often but the morphine helps. Speaking of the wonder drug he was just given some more so that will help. He is still in good spirits and has been joking with the nurses which is nice. Today should be the worst.

Vivian has been wondering where daddy is. Grammie taught her to say "Daddy at hospital. ALl better." We are probably not going to bring her in to see him. There are so many cords and buttons that she will want to play with and that would not be good.

We appreciate all of your positive thoughts, notes and messages.
GCB

Surgery update #2

2008-07-08T19:57:00.004-04:00

Mike is doing well. He is very groggy but has been joking around so he is definitely on the mend.

As the surgery was wrapping up the anesthesiologist did an intrathecal which is like a spinal tap which delivers pain medication directly to the area that he had surgery on. This is helping to manage the pain along with a morphine pump. The intrathecal will wear off in the next 18 - 24 hours but Dr. Foster is hopeful that it will get him through the worst of the pain and the morphine will get him through the rest.

He is not allowed to eat or drink as of yet and is quite thirsty. For now he has little sponges on sticks that are soaked in water and he is allowed to swab his mouth to keep it moist. His throat is pretty sore as he had a tube down his throat to help him breath during surgery.

His incision is from his sternum to just under his belly button. We will post before & after pictures when his bandage is removed. Dr.Foster checked in with us this afternoon. He told us that while removing the mass and surrounding tissue he inspected the surrounding organs and all looked good.

The nurses told Mike they want him to get out of bed tomorrow to walk around. He is not so sure he wants any part of that... He was pretty happy when he found out the hospital (unlike the hotel) has Versus so he can watch Le Tour de France.

Janise is visiting him at the hospital now. We are so grateful that she is here with us. Vivian is in heaven with all of this grammie time.

Surgery update #1

2008-07-08T10:47:00.002-04:00

We arrived at the hospital at 5:30 a.m. Mike was admitted to the hospital and we went to the preop area. He answered many questions from several different nurses, doctors and CNAs. He got an IV (twice). The first did not go so well so he had a second. He went in to the surgical area at 7:15 a.m. and surgery began at 7:55 a.m. I went back to the hotel briefly and grammie was able to shower. I was able to have some much needed coffee then back to the hospital. After a short wait the beeper I was given went off and I was directed to a private area and met with Dr. Foster. All went as planned! PHEW... I am back at the hotel awaiting a call that he is wrapping up in recovery so I can meet him in his room. He will be heavily medicated today but they hope to have him sitting up by tomorrow. I will write more later.
GCB

Vivian's Tour of Our Indiana Home

2008-07-08T05:39:00.003-04:00

TODAY IS DADDY’S OPERATION . MOMMY SAYS THERE WILL BE A LOT OF WAITING FOR US, FOR OUR FAMILY AND FOR ALL OF OUR FRIENDS. SO I’M THINKING THIS WILL BE A GOOD DAY TO TAKE YOU ON A TOUR OF OUR “INDIANA HOME”.

THIS IS WHERE I’M LIVING FOR A LITTLE WHILE. WE GO INTO A BIG TALL BUILDING AND TAKE AN ELEVATOR. I PRESS # 4. OUR LITTLE APARTMENT HAS A KITCHEN, LIVING ROOM AND TWO BEDROOMS. I SHARE MINE WITH GRAMMIE AND JONAH SHARES HIS WITH MOMMY AND DADDY. I HAVE A CRIB; JONAH SLEEPS IN THE BIG BED.WHEN DADDY COMES BACK FROM THE HOSPITAL, WE MIGHT MOVE JONAH INTO A BUREAU DRAWER. WE HAVE SOME BIG ONES.

I HELP OUT WITH MOST OF THE CHORES. TODAY WE WENT BACK IN THE ELEVATOR AND I PRESSED # 1 TO GET TO THE LAUNDRY ROOM. WE DID TWO LOADS OF WASH, WHICH I HELPED TO FOLD (AND UNFOLD). EACH MORNING DADDY AND I GO TO THE FRONT DESK TO PICK UP A NEWSPAPER AND DROP OFF THE TRASH. WE’RE PRETTY BUSY MOST OF THE TIME. WE GET BACK IN THE ELEVATOR AND I PUSH #4.

MOMMY GETS JONAH READY IN THE MORNINGS AND THEN WE TALK ABOUT WHAT WE’D LIKE TO DO EACH DAY. WE TIDY UP AND THEN GO OUT, USUALLY TO A PLACE WHERE I CAN RUN AROUND FOR A WHILE. DADDY SAYS IT’S GOOD FOR ME TO GET TIRED!

WE HAVE A BIG POOL IN THE BACKYARD AND A PLACE TO COOK OUT, TOO.

WE KEEP SOME CANDLES LIT THAT MAKE THE PLACE SMELL REAL GOOD. WE ALSO HAVE A BOQUET OF FRESH FLOWERS ON OUR DINNER TABLE. IT MAKES IT NICE TO HAVE A PRETTY PLACE TO SIT DOWN AND TALK ABOUT THE DAY. HOPE YOU LIKE THIS STORY AND OUR SLIDE SHOW. I THOUGHT YOU’D LIKE TO SEE WHERE WE ARE AND WHAT IT LOOKS LIKE. IT’S PRETTY COOL……AT LEAST FOR A LITTLE WHILE. LOVE, VIVIAN

Happy Monday...

2008-07-07T20:48:00.002-04:00

We would like to thank you all for your positive thoughts. We are very lucky to have special people in our lives and your concern and love for our family is truly appreciated. We made some changes to the blog to make it easier to see pictures and slide shows so it may look a bit different today.

We started and ended our day exploring the city of Indianapolis. It is a great city. We are not psyched about the circumstances that brought us here, but, we are glad that we have been able to visit.

Mike and I went to the IU Cancer Center and met with Drs. Foster (urological surgeon) and Kessler (thoracic surgeon). We left with some good news. Mike will not be having the thoracic surgery. The nodes in his lungs have shrunk to a size that are not of concern. Mike will be admitted to IU at 5:30 a.m. and have RPLND surgery tomorrow morning. The surgery will be 2 or 3 hours long (instead of the 5 hours we expected with both surgeries) he should be sent directly to a regular room (no ICU which is standard with thoracic surgery). His hospital stay may be a bit shorter than originally expected too. Although the RPLND is still a very serious surgery we are very excited about this turn of events.

Again, we can not thank you enough and will keep you posted.
GCB

Sunday, July 6, 2008.

2008-07-06T20:50:00.003-04:00

Today started out pretty early - all dressed, fed and in the parking lot of the Indianapolis Zoo by 8:45. (Hooray for Starbucks). Thankfully, there was no long line of cars like yesterday, and the morning was still cool with a nice breeze, giving us time to explore all the exhibits before the high heat and humidity kicked in. Yesterday was Vivian’s day - the Children’s Museum put her over the top with excitement and all kinds of opportunity to interact. Today, I’d have to say, was most embraced by Mike. He’s big on zoos and this one didn‘t disappoint! He had us all perfectly scheduled around and through each area (farm, safari, aviary, koala house) to ensure we were right on time for the dolphin show. It was well worth it. And once again, Jonah slept through it all.

This afternoon started the wind down process - kids napped, we napped, watched the longest Wimbledon final in recent history. After some time at the pool where everyone took a swim (except for our sleeping Jonah), we set out to find the hospital and get ready for Mike’s business at hand that starts tomorrow with a consultation with his docs and pre-op preparation. This time, the GPS got us there directly, and it’s less than two miles from our “home away from home”. The IU Medical Complex is huge, modern and very impressive. Gilda will accompany Mike tomorrow. They expect to get all the details, the schedule, and the extent of what the process will entail. Mike doesn’t check in until early Tuesday morning, so our plan is to tour a little bit of the downtown tomorrow afternoon. A little Indiana trivia: Indianapolis has war memorial monuments and statues second only to the number of monuments in Washington, DC.

Tonight Gilda and Mike are on a date. They’re off to dinner at the Alcatrazz Brew Pub (upon the advice of the traveling Monaghan boys - Matt and Seth). Vivian has just closed her eyes; hopefully dreaming of koala bears (actually - a little more trivia - koalas are not bears at all, they are marsupials). And of course, Jonah is sleeping.

Thanks to all for checking in and leaving messages on the blog. Makes us all feel a little closer to home. JVM

Day One

2008-07-05T19:39:00.003-04:00

Howdy y’all. Our first full day in Indy was very busy. First , I will rewind to the grocery shopping experience. All I will say is we sure miss Hannaford and Whole Foods. Back to day one. We all slept in until 8:30, very late for us. We wanted to go the Indianapolis zoo, we arrived there at 2:30 to find the line to the zoo to be a ¼ mile long. New plan. We ended going to the children’s museum of Indianapolis , The largest in the world. The museum was absolutely amazing, 4 floors of fun. Vivian went crazy the whole day , she even to started to shake with excitement at certain exhibits. Jonah did his norm of sleeping .After about 2 and ½ hours of exploring we went to the famed sight of the Indianapolis 500. After a few photos, (just because we are here), we headed back to our temporary home for dinner and to rest up for the zoo.
MRB

Are we there yet? Yes we are.

2008-07-04T21:13:00.002-04:00

We made it! We had an early day and all went well. We were at the airport at 5:30 and in the air by 7:30. Vivian and Jonah were absolutely wonderful. We were so nervous that they would be a nightmare on the plane but neither shed a tear. Vivian chatted and read books the entire trip from Portland to Philly and slept most of the way from Philly to Indianapolis, as did Mike. Jonah slept most of both flights. Vivian did check to see if the floor in the airport would be a good place to take a little rest. She laid down in the middle of the corridor and was quite happy with herself.

We touched down in Indiana and were off to find the hotel. With all of the craziness in getting ready to go none of us had the hotel info. We had Loren’s GPS and found what we thought was our hotel listed on the GPS, it however was not our hotel. We ended up seeing quite a bit of Indianapolis as we drove around in circles. One may ask, why would you drive around in circles if you had a GPS? We wondered the same thing. Well after confirming the address and typing it into said GPS we received a message that no such address exists. Hmmm… with all of the technology we had available (GPS, 2 cell phones, a blackberry and a lap top with wifi) we ended up going old school and stopping to ask for directions. That did not work either. In the end we called the hotel and the nice man that answered gave directions and responded to Mike’s “so we’ll see you in a few minutes’ by saying “If not today, tomorrow.”

We are very pleased with the accommodations and Vivian is thrilled to be sleeping in the same room as Grammie. Mike and I are certain that travel would not have run smoothly if Grammie was not with us.

We knew Indianapolis is the home of the Indy 500, but, we did not know that driving here would be like competing in the race. Blinkers are not used. Speed limits are not followed. It is certainly exciting.

More from Indy tomorrow.

Getting ready.

2008-07-04T00:07:00.000-04:00

We are all packed and ready to go.

We are normally very excited to travel, but, preparing for this trip was bittersweet. We were able to take care of last minute chores that needed to be done. Vivian's friends at school gave her presents for her trip. She will be entertained well on the plane.

The last few days were not all work, work, work. Yesterday Mike got to surf for a few hours. We went to dinner with Anthony and Kirby (a.k.a. Turby). Today Mike and Vivian were able to get some swimming in thanks to Andy and Caity (and Joan and Roger). We did a quick visit to my parents and Vivian was able to get one last playdate with Louie before the trip. Mike ended the day going to see our friends Rich and Warren playing at Gritty's. He caught up with many of our friends while he was out.

Now we are trying to wind down so we can wake up in a few hours to go. More from Indy. Happy 4th!

What has Mike been up to?

2008-06-30T23:05:00.001-04:00

We have had lots of questions about how Mike is and what he has been doing.

During chemo he continued his active lifestyle. He downhill skied, Nordic skied and surfed. Remaining active helped Mike keep his spirits up and allowed him to not feel like a patient for a while at least.

After chemo he continued to surf (when there were waves...), he reacquainted himself with golf (to the point of obsession) and he got back on his bike. He had a goal to make his Saturday morning group ride (SMR) with the Portland Velo Club prior to leaving for Indiana. Although he got a flat he was able to finish with the group on the ride a few weeks ago.

We are unsure what recovery will entail and how long he will be out of commission. Mike is preparing to hang up the bikes, boards and stow the clubs away until further notice. He hopes to be able to race by the cyclocross season this fall. More importantly he wants to be able to get in some fall surfing!

So in short he is the same Mike he has always and will always be. Overcoming any obstacles in his way.

Why Indiana?

2008-06-29T20:46:00.000-04:00

We have been encouraged to create this blog to keep you all up to date on our journey to Indiana. We will do our best to keep it up to date.

This journey began about a year ago...
Mike developed a rash on his hands that would not go away. He went to the doctor about the rash and was given some medicine to make it go away. It did not... so back to the doctor he went. He left with a stronger dose of medicine. A few months later the rash was still there.

Mike felt that this was more than just a rash so he asked to see a dermatologist. The dermatologist thought it may be lupus and took a biopsy of the rash. The biopsy determined it was not lupus, but, dermatomyositis. This was just before Thanksgiving of last year approximately 5 months after he initially noticed the rash.

Mike was then sent to the rheumatologist. The rheumatologist was not convinced that this was the correct diagnosis and advised Mike that sometimes cancer presents itself as a skin rash. This began a series of tests... chest x-ray, lots and lots of blood work and finally a CAT scan.

The CAT scan showed that a lymph node in his neck was slightly enlarged and one in his abdomen was enlarged, a biopsy would be necessary. Off to the surgeon... on the day of his surgical consult the node in Mike's neck was noticeably larger so on February 5th we were off to Mercy Hospital for the biopsy. On February 13th he got the news that he had a malignant germ cell tumor. Mike had cancer and was referred to an oncologist at Maine Cancer Center. The oncologist was on vacation so Mike was advised he could be seen two weeks later. This was unsettling news.

In the meantime, the area that had been biopsied in his neck did not seem to be healing. Mike went back to the surgeon to have it checked. While there he mentioned that he had some concerns that made him think he could have testicular cancer. (This was not the first time he had mentioned this concern to a medical professional). The surgeon examined him and made an appointment for him to see a urologist the following day.

The urologist immediately confirmed that he did, in fact, have testicular cancer and that he would be scheduled for surgery immediately. He was sent for another CAT scan, an ultrasound and more blood work. The cancer had spread. The initial nodes had increased in size and there were more... In addition to the nodes in his neck and abdomen Mike had spots in his lungs. To give a little perspective on how fast the cancer was spreading his initial CAT scan was just over a month before the second. The next afternoon, February 22nd, Mike was again at Mercy being prepped for surgery and would be meeting an oncologist at Mercy a few days later.

Things were moving fast!
We met with Mike's oncologist and a treatment plan was put in place. Mike would have a surgical procedure to place a mediport in under the skin in his chest. A mediport is a small device which allows medication to be delivered directly into a vein. He would have an MRI to make sure the cancer had not spread to his brain. Mike would start treatment one week after the plan was put in place. Mike would undergo 3 or 4 rounds of chemo. The course would be aggressive. A round would consist of 5 days of cisplatin and etoposide, he would also have bleomycin on the first day. He would follow up with bleomycin the following 2 Mondays.

Mike had a great attitude and was very positive throughout this entire process. He did very well through the first round of chemo which started March 3rd. The side effects were minimal and the results were amazing. We could literally see the chemo working! The node in his neck was visibly smaller. On to round 2... he suffered some side effects. He did not feel good. He tried very hard to keep the side effects at bay and do all of his normal activities at home and with Vivian. He was determined to get the nursery ready for the new baby too. After round 2 he had some scans and a stress test which showed that his lung function had decreased. This is a common side effect of bleomycin and the oncologist decided to stop bleomycin. Round 3 was not as kind to Mike. He felt horrible surprisingly he was still very positive. The good news was that he was responding so well to chemo that a forth round would not be necessary. Mike finished his chemotherapy on April 18th.

We were back at Mercy April 24th to welcome Jonah into the world. Unfortunately, since chemo is cumulative Mike still felt horrible. He split his time at home with Vivian and at the hospital with Jonah and I. We brought Jonah home on April 26th. Back to Mercy April 28th for Mike's lab work. His blood counts were very low and he did not feel good. We went back home and a few hours later he had a high fever. Mike had an infection and with low blood counts he was unable to fight it, he was admitted to the hospital. He had IV antibiotics and saline for hydration continually and was under nutripinic precautions (gloves and masks required for anyone that entered the room). He was released April 30th.

Mike then had another CAT scan. The CAT scan showed that most nodes were back to normal. There was a node in the abdomen and a few in the lungs that still caused some concern. Mike went back to the urologist to discuss the next step. Another surgery would be necessary. He would need a Retroperitoneal Lymph Node Dissection. It was tentatively scheduled for June 23rd here in Portland. Mike's oncologist called Indiana University for another opinion and he was already scheduled for a second opinion in Boston. The doctor at IU recommended that Mike have the RPLND and thoracic surgery to remove the spots in his lungs at the same time.

This could not be done in Portland or Boston. The options were limited... Sloan Kettering in NYC or Simon Cancer Center at IU. Mike chose IU because they are the foremost researchers in testicular cancer. TC patients throughout the world travel to IU for this surgery.

So that is the very LONG answer as to "Why Indiana."

Mike, Vivian, Jonah, Janise (Mike's mom) and I will be leaving this Friday, July 4th for Indiana. Mike will have surgery on the 8th and will be in the hospital for 4 or 5 days. Loren (Mike's sister) will be joining us on the 11th for a few days.