Back home in Maine!!!!

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.

• 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.

• 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!

Leaving the hospital

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

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

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:

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.

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!

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...

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.