Hello friends and family-
As you know, Dean had his 1 year-post-transplant anniversary appointments during these past two weeks.
We got to hear all of the results a few days ago, and they are all good.
(all good!!!)
That seems like such an understatement. It is incredibly welcome news, and there is really no way to give it enough poetry or exclamation points… so I’ll just stick to the facts…
Basically, on a molecular level, Dean is doing beautifully, one year out.
He is 100% donor, there is no molecular evidence of MDS, all of his various blood counts are either in the normal range or climbing steadily towards normal… such beautiful results.

It was kind of a funny appointment last week- we got to hear all of this wonderful news, ask questions, tell a few jokes… and then were informed that Dean would be getting the first round of his vaccinations today (it’s like having your childhood vaccinations all over again), it would be “six or seven shots… and you might feel pretty bad for a few days afterwards.”

Ack!
So, we didn’t have a lot of time to celebrate before another procedure was underway.
(Apparently the nurses stood on either side of him, and gave him simultaneous shots in each arm. Ouch.)
And so it continues, this healing odyssey.
There is a long stretch to go- fatigue and nausea are things that come and go.
Dean is weaning himself off the last of his medications- not an easy task.
Integrating all of this past 16 months into who he is now, as a musician and as a person- something that will take years, I think.
He is playing all the time at home, and taking gentle but definite steps back into working/recording/performing.
On the exact date of his one-year anniversary, Dean played his first public performance in over a year. That was an incredible way to truly celebrate.
As always, I close by saying “thank you.” There are never enough ways to say these words… you have all helped to carry us through this year, and you continue to help. Thank you.

So much love,
Megan

Ps- I will send out another email soon with information about the bone marrow donor registry and cord blood registry… in case you’d like to get on those lists.

Hello friends and family,

Ok, here is the latest update about Dean and how he is doing…
Overall- really well.
(!!!)

I can see him getting stronger, both in body and spirit, every day. He is playing a lot of music at home, entering (very gently) back into recording music, putting the final touches on a duo CD that he and Marcus Wise recorded last year… it’s all amazing and so so good to see.

Fatigue, nausea and “what to eat” continue to be challenges every day.

It’s a challenging time, I think- still in the recovery process, feeling really good some days and other days not so good, getting frustrated by how freaking long this goes on, finding ways – over and over – to stay grounded and present. All part of this thing called healing.

There is an upcoming event that I want to draw your attention to…

An amazing group of people has organized a second benefit at the Celtic Junction in St. Paul- it’s happening all day and evening (12:00 noon -10:00 pm) this coming Sunday (8/22), and you can find out much more information by visiting this webpage . I am really hoping that Dean and I can be there – even if it’s just to stand in the doorway and soak up some of the music and love.

The timing of this benefit couldn’t be better… this week and next week are Dean’s “anniversary appointments.” A year ago, Dean had his bone marrow transplant. (It seems like it’s been much longer than that, and at the same time as if it just happened.) Now he will go through another bone marrow biopsy, so that his bone marrow “team” can see how he’s doing on a molecular level at this point in his recovery.

So the main purpose of this email is to ask for your positive energy, your prayers, your healing thoughts… whatever you can send Dean’s way in the next few days.

The bone marrow biopsy happens on Thursday morning (8/19) of this week. We will meet with Dean’s oncologist a week later to go over the results.

Myself, I am visualizing beautiful and healthy results, through and through. Complete healing. Bone marrow that is vibrant and healthy, doing its bone marrow thing, getting along beautifully with all the other cells, being woven into the community of cells and vibration that are all part of the song and the dance that is Dean.

Thank you for everything you have shared with us during these past 16 months. It is a web of love and light you have all created. Thank you. Again and again, thank you.

Love,
Megan

Hello all-

First, my apologies for the long silence. I was out of town for a week (for the first time in over a year!), and promptly got sick when I came home… so I haven’t spent much time communicating with others.

An overdue update about Dean…

So much good to report. Basically, everything is headed in the right direction. (Thank you, Universe) Dean is getting stronger, physically, all the time. He is playing a lot, and is just beginning to dip back into doing recording sessions (I should emphasize the “just beginning” part of that- this is still in one step at a time territory). He renewed his driver’s license, and has been driving himself around on a few experimental outings… He is off ALL of his scheduled medications !!! He definitely looks like he is gaining back some weight. This is all good good GOOD!!!

Eating continues to be a big challenge, as does nausea. A brief experiment with dairy products led to a truly awful night of illness- which is a bummer because Dean loves cheese. Fatigue is also something that waxes and wanes. He is still having monthly infusions of “iv-IG”- a blood protein which helps with immunity (my extremely layperson explanation of this). These infusions take a long time, and leave him feeling pretty awful for several days- so that is a challenge.

Dean has his “anniversary” (one year post transplant) appointments in late August. This will mean another bone marrow biopsy (ouch), and then a follow-up appointment to find out his new bone marrow is doing. This is a very big deal. Please keep the positive energy/prayers pouring towards Dean’s entire self as he makes his way towards this landmark in his healing.

I look at Dean sometimes and wonder how it feels- to be slowly slowly re-entering this world. I feel as though he’s been to the moon, or somewhere even more extreme. How does one return from such a journey?

Slowly. One step at a time. With plenty of time to rest and recuperate.

And sometimes I remember to give thanks (although never as often as I should) that he is having the opportunity to return at all.

As always, I am thanking each one of you. For the love you have shared, the prayers, the endless healing energy. I do not think we could have done this without you- your practical support, your emotional support, the love and prayers and phone calls you have shared… This is a marathon, and I understand that we aren’t done yet. But I think both Dean and I feel a new sense of hope and possibility, and I can’t begin to tell you how good that feels.

LOVE Megan

PS- I think there is one more benefit coming up in mid-August (where to begin with the thank you’s on this one? There is no way to say it with enough frequency or volume. Thank you.) You can find out more details here…

Hello loved ones-

A very quick update about Dean:

Surgery last week went beautifully, with no complications.

He is home now, recovering- tired a lot, in pain, but making good progress (I think).

He is all the way off prednisone now (!) and beginning to taper down some of his other immunosuppressants. Please send good energy towards his whole system- to aid in healing from surgery, and in staying strong through his ongoing recovery from the transplant (over a year ago now).

Thanks,
Love,
More soon-
Megan

PS- as always, please feel free to forward this along to others.

Hello friends and loved ones…

Here is a long overdue update about Dean.

I am sorry it has been so long.

Dean continues to be very tired, often nauseated, not gaining any weight.

He is playing music at home, when he can. He walks every day, does PT and OT, eats what he can.

He is amazing with his self-care and strength… that being said, at times he gets so sad and angry… this is long and long and exhausting.

And it is often very lonely.

He is being slowly weaned off Prednisone- once he gets all the way off that, he will wait a couple of months, and then begin to taper down the other medications he is taking. It will be an amazing and wonderful day when he does not need to take ANY PILLS AT ALL. Something to look forward to.

Dean has continued to struggle with abdominal pain- sometimes extreme.

So, after many different doctor visits, a couple plans have been put in motion. (The BMT doctors are not convinced Dean’s pain and nausea are caused by GVHD. So- they/we needed to look for other causes and solutions.)

Dean is having monthly infusions of a blood protein called IgG (I think this stands for immunoglobulin). We all need this blood protein to support our immunity- and Dean’s levels have been very low. This will hopefully help with abdominal pain and nausea.

Dean will be having his gall bladder removed.

This will help with the severe abdominal pain- the pain that has sent him back into the hospital three or four times now.

This surgery is scheduled for May 17, at 10:30.

Like any surgery, this has risks.

Please, send prayers, positive energy, healing thoughts… whatever works for you/feels honest and true… to Dean as he goes through this surgery and subsequent recovery.

Those are the nuts and bolts of what I can tell you.

Other things to write about…

Dean is still unable to work- for a whole constellation of reasons.

However, he is playing guitar at home, when he has the strength and the energy- and what he is playing soaks into my heart and heals the hurt and tiredness and the fear. I don’t think he realizes how often I fall asleep on the couch outside his music room, when his music makes it possible for my mind to be quiet and calm for at least a little while.

I wish so much you could all be hearing him, too.

Family members keep coming into town to offer practical and emotional support. This is an amazing gift.

Marcus Wise showed up one day and fixed our front steps and sidewalk. Out of the blue. Thank you.

I have been told there is another benefit being organized- for August, I think.

I don’t know how to say a big enough “thank you” for that.

I want to mention that Dean’s children, Dugan and Claire, have been going through this with us, and I can’t really imagine what it is like for them. If you have a moment to send some extra love their way, please do.

And most of all, I thank you – from the bottom of my heart – for your love, your prayers, your support- for being part of the web that holds Dean each and every moment in an ocean of healing and light.

Love

Megan

Hello friends and family-

Happy almost-April… it feels like summer is truly coming. I am sitting in our backyard typing this (thank you, Cindy Low)- what a luxury.

As some of you know, Dean had to go back into the hospital last week. It caught us both very much off-guard… and that was hard.

On Monday, we went to the BMT clinic for a routine clinic visit, and Dean was feeling fine. His counts looked great, he had gained weight, and his oncologist thought it would be fine for him to wait a month before coming back to the clinic. On our way home, Dean commented to me, “for the first time, I believe that I am going to be ok, and make it through this.”

We took a walk, Dean lay down for a nap… and woke up with severe abdominal pain and nausea. To summarize a long hard afternoon, we spent several hours back at the BMT clinic, and then Dean was admitted into the hospital. Later that evening he had a high temperature. He received IV fluids, IV antibiotics, and steroids.

The good news is that it was a short stay- Dean got to come home on Thursday.

The hard part is that none of the doctors are exactly sure what caused these symptoms- an infection? GVHD? It’s unclear.

So psychologically, this is difficult for both of us… but especially hard on Dean.

Here is a very good thing that happened (there are many good things- but here is one I want to mention)—on Dean’s second day in the hospital, he had a new “attending physician” (the physician who comes to check in each day). This particular physician is the head of the BMT dept, but we had never met him. As he was introducing himself to Dean, Dean mentioned, “I play music for a living.” The doctor replied, “I know! I’ve heard you play you several times… I made all of my colleagues check out your website so they could hear your music.”

A few minutes later, the doctor and his assistant left the room. Then the doctor came right back in, to tell Dean, “I mentioned that I’ve heard you play… and I want you to know that we are going to get you through this and back to playing music. We need to – your music is important.”

That particular exchange meant a great deal to both Dean and me.

So now we are home, and Dean is doing much better now- eating, sleeping, playing music, taking walks… basically taking things one step at a time. He gets very tired.

I cannot really imagine what kind of mental, emotional and physical stamina is required for him to continue, every single day, with this tremendous task of healing from the deepest core of his being.

So I am thanking you for all the healing energy you have sent his way, and our way, thus far… and I am asking you to please keep sending it. In prayers, in music, in writing, in movement- whatever form feels honest and right. Dean is moving through this, but (as we keep on saying) he is still very much in the thick of it, and every extra pulse of love helps.

Thank you,

Love,

Megan Flood

Hello friends and family-

Here is a long-overdue spring update about how Dean is doing…

First, thank you (many times over) to all of you for sending emails, cards, care packages, leaving phone messages, dropping off food- all of these expressions of love have meant so much, to Dean and to me.

Thank you.

We are still in the thick of it, but the news at this point is almost all good.

Dean had his 6-month post-transplant bone marrow biopsy two weeks ago. A bone marrow biopsy is not a pleasant experience (it hurts a lot), but it allows the BMT doctors to take a look at what is going on in Dean’s bone marrow on a molecular level.

All of the results were great (!); as Dean’s doctor put it, “Your bone marrow looks beautiful.”

There is no evidence of MDS (the blood disorder that made it necessary for Dean to have a bone marrow transplant), there is no evidence of lymphoma, and Dean is 100% donor.

This is incredibly good news. It essentially means that things are all moving in the right direction.

So I’ll pause here for a moment to say “thank you” (THANK YOU!!!) to the Universe for this kind of healing.

Dean still has a long ways to go in his recovery.

The medications being used to treat the GVHD are hard on Dean’s body- they make him very tired, and at the same time, make it difficult to sleep. Dean still needs to be very careful about infection- his immune system is basically being dampened by the drugs being used to treat GVHD. These medications will gradually be tapered down, allowing his new immune system time to acclimate to his body…but it’s a long, slow process.

For those of you sending prayers, visualizations and healing energy our way, please send extra good energy to Dean’s digestive tract – asking that all of the cells in Dean’s body, particularly in his digestive tract, can coexist in harmony.

I think the other thing that is quite difficult now is how freaking long this has gone on. Dean doesn’t get to take a vacation from this process, not even for a moment- and right about now it feels like it has gone on forever. I wish I could lift it all away, just for an hour or a day, to give him a respite.

That being said, Dean continually amazes me with the way he is supporting his own healing. Walking, meditating, playing music- helping himself to heal.

Our mantra right now is “one step at a time.” So that is how we are doing this.

There is my update-

Thank you for all of the love you pouring Dean’s way/our way-

It is impossible to tell you how much it matters.

Love and peace,

-Megan

Hello people who love Dean-

Here is a very long (and long overdue) update- it has two “parts” to it. The first was written on January 5. The second part I wrote on Tuesday, January 12, 2010.

I know you all care so much about Dean, and that love and healing energy is so important to him, especially right now. Please keep sending it his way.

1. Part one, written 1/5/10:

Dean had to be rushed to the ER yesterday, and was admitted back into the U of M hospital last night. He is stable now, and feeling a LOT better… in fact he is sleeping soundly right now, I am sitting next to him.

To back up a little- he had been doing pretty well. Feeling overall “ok”, with enough energy to go for two, sometimes 3, walks each day, eating three meals a day, playing a lot of guitar, watching movies at home… all good stuff. Hard stuff was feeling often tired, often “overall yucky,” having a rash all over his body (which has been slowly going down), having occasional bouts of diarrhea or vomiting. Basically the long slow haul of healing. Also the very lonely (at times) journey of healing… I think one of the hardest parts of this for Dean has been the isolation- partially imposed by needing to be so careful about infection, partially imposed by lack of energy, and partially imposed by circumstance (not being an active part of his social or professional circles right now).

Anyway- yesterday afternoon, after a really nice morning, Dean was coming home from a walk, and started to feel “really bad.” He was home alone at the time, and called 911.

I met him at the ER. Because Dean had his central line taken out a few weeks ago, they had to put two IV’s in him. That was very painful. They started giving him fluids right away, and did a lot of bloodwork. Dean’s creatinine levels were very high, as were his lactic acid levels. Apparently his pH numbers were really off-kilter as well. They now think all of this was due to extreme dehydration and hyperventilation.

He has been getting non-stop iv fluids since arriving in the ER. Dean has had a chest x-ray and a CT scan. All of that looks fine- nothing to report (which is great). They are testing for multiple infectious “things” (sorry, not specific).

What the medical consensus seems to be right now if “some kind of infection”- the rapid onset and severity of onset tend to make them look more towards an infection and less towards GVHD. Dean is on several antibiotics, and if they can figure out exactly what is going on, they will get more specific with the antibiotics.

Dean has also lost a lot of weight, so depending on how things go with eating, he may need to start TPN again. Since he no longer has a central line, this will mean giving him a “pic” line in his arm. Of course, one of the first things that brings up for him and for me is – playing the guitar (is it possible with a pic line?).

There is a great attending physician taking care of Dean right now, and she is here on the floor until Tuesday of next week. She told Dean today “you’ll be home way before then.” So- that is what I am hoping for, too. We are basically in “wait and see” mode, and Dean is in “rest and recovery” mode (sleeping and sleeping) after the trauma of yesterday. He is drinking clear fluids and eating ice chips.

Ruth is here- she arrived last night, and came directly from the airport to the ER. I am so glad she is here. She has been driving back and forth… she drove all the way to our house from the hospital at midnight to get my contact stuff, and then brought it back here so that I could stay overnight with Dean. My mom will be arriving on Sunday- and again, I am so glad. She will be here for a two weeks, along with my Dad.

I do think Dean is ok, and that this is a “blip.” It just happens to be kind of a terrible blip.

and i certainly love you all. Megan

2. Part 2 (written January 12, 2010)

Dean got to come home from the hospital Saturday afternoon, was home all day Sunday, and had to be readmitted to the hospital on Monday (yesterday). It was a day of difficult decisions… Should Dean be readmitted, should he start on TPN, should he have a PIC line placed… Fortunately Dean, my mom, and I had a long talk on Monday morning about these very questions, so we felt prepared when the BMT folks began asking.

It felt important to say “yes” to all of these questions. It just didn’t feel safe, to Dean or to me, for him to keep trying to survive at home. He hasn’t been able to eat, and he is feeling awful.

It is unclear how long Dean will be in the hospital; They are looking for evidence of GVHD, and in the meantime, they are giving him fluids and TPN (iv nutrition). Dean does have a PIC line (placed yesterday- the placement went very well), and it is not certain if he will be able to play the guitar while this line is in. That was a very hard conversation. But I think both of us feel clear that it is most important for Dean to be able to get some nutrition in him (and he needs to have a PIC line for TPN to be an option)… and eventually that line will come out.

He had several “scopes” today, looking for evidence of GVHD. I think everything went smoothly and well.

And that is where things stand as of now. Dean is safe and getting good care, and we are taking things one step at a time. We are all very tired.

Thank you for all the love, emails, phone messages, cards, and waves of healing energy you are sending Dean’s way. The main thing I am asking right now is to please send regular emails to Dean – deanmagraw (at) gmail.com – letting him know that he is loved and supported.  I know, and he knows, that people are thinking of him… but sometimes it is nice to have a written reminder.

Love Megan

Hello family and friends-

Here is an overdue email from me, updating you all about Dean ☺

Dean had his “anniversary check-up” (100 days post-transplant) last week, and this week we got to officially hear the results from Dr. Majhail—everything looks good on a molecular level, and Dean is “100% donor.” This was exactly what the BMT folks were hoping to see (it is really really good news) !

Today Dean had his central line taken out – another milestone. It went smoothly and well, with not too much pain.

Basically Dean is doing really well. Eating continues to be difficult, mostly because he always feels full (never hungry), and food literally does not taste good. So it’s a constant experiment to find out what will taste at least ok going down, and also settle easily in his belly.

I feel like he is getting stronger every day- able to go for longer walks, able to play guitar for longer stretches at a time. The flip side of this is that many of Dean’s muscles are very weak, and sometime he feels as though he is actually weaker every day- not able to lift certain objects or do certain things on the guitar. This (according to BMT folks) is probably in large part due to the prednisone Dean is still taking to treat GVHD, and so Dean will hopefully feel his muscles beginning to strengthen after he is completely off the prednisone.

And both of us are tired. This is a long and unrelenting process.

Dean’s doctor reminded us, at Dean’s clinic appointment yesterday, that the recovery timeline for a bone marrow transplant is roughly one year. It was both hard and helpful to hear this… a year is a long time. But what a good reminder to be patient, to settle in for the long haul, and to remember that Dean is literally only a quarter of the way along this journey.

So- I send you all love, and so many thanks.

I have heard about every benefit that has happened, and I can never express enough appreciation for the time and energy so many of you have shared.

Thank you, too, for the cards, the letters, the emails, the phone messages… all of the ways you continue to remind Dean that he is loved and loved and loved.

As always, thank you.

Love,

Megan

(feel free to forward this along…)

Hello music folks, friends, family members…

Here is a long overdue update on Dean, and a THANK YOU to many folks.

First, the thank you’s (and this is clearly an incomplete “list”)—thank you to each family member who has taken time to come to town to be with Dean and me, to go with us to the BMT clinic, to help with endless home tasks, to provide emotional and logistical support … endless thanks to all of you.

Thank you to the friends who have taken charge of selling Dean’s CD’s, helped us with home repairs, made us food, sent us cards…

And a HUGE thank you to all the people – musicians, organizers, promoters, people who came, listened, danced and spread positive energy around … all of you who have given of your time and talent and your financial support to make so many benefits happen. Most recently, boundless gratitude to those of you who created the benefits at the Cabooze, and at the Artists’ Quarter. There is really no way to express enough appreciation… please just know that we love you, and we thank you, from the bottom of our hearts.

And here is a “head’s up” about a few more amazing benefits that are about to happen-

This Saturday night, November 21, “Boiled in Lead” will be performing at the Cedar Cultural Center.

The following Wednesday night, November 25, an exceptional group of artists will gather at The Crossings (in Zumbrota).

And on December 6, the Black Dog Café, in lowertown St. Paul, will host a CD sale (just in time for the holidays!).

*You can read about all of these happenings at the remarkable website, www.dothedean.com (and here is another HUGE thank you to Nick Lethert, the person who created and maintains that beautiful website).

And finally-

An update about Dean…

Essentially, Dean is doing really well.

Dean is almost 90 days post-transplant now.

His “counts” continue to look wonderful (meaning that his white blood cells, red blood cells, and platelets are all being created and doing their marvelous thing). A molecular study confirmed that Dean’s blood is “100% donor” – so the cord blood is engrafting and creating a new immune system for Dean. *(this is huge and wonderful news)

Various medications have created their own challenges- some of the med’s mess with Dean’s emotions, others make it difficult or impossible to sleep, one might have been creating pain in his wrists (he is not taking that particular medication, an antibiotic, anymore, which is good).

Eating is still tough, but that seems to be slowly getting easier for Dean.

All of this is “normal” for anyone who has received a bone marrow transplant.

We are still keeping Dean in near-isolation. One of his doctors explained that yes, Dean is doing wonderfully, but right now he really only has 25% of a “normal adult immune system”- so he continues to be at risk for infection and illness.

Dean is playing his guitar nearly every day. I can’t tell you how good it feels to hear him play again.

As I have said before, this is a long marathon of a journey, and it is tough. Dean is navigating this, step by step, and we are definitely still in the thick of it.

For my part, I keep visualizing a golden pathway of light, leading Dean through every twist and turn of this journey.

So, I send out gratitude to each of you for your love, your prayers, your support. You are the ones who are helping to create that pathway of light for Dean. I’ve said it before, but it continues to be true- it all matters. Thank you.

Love

Megan (Dean’s wife)