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Day Three

Laird's Blog -

It's a new month and I'm entering the final stretch of my stem call transplant: recovery.

Yesterday I started feeling weaker—as predicted—and I was out of breath after walking downtown (a bit over a mile round trip) at a leisurely pace to collect a Sunday paper. Because I knew that was likely to happen it didn't freak me out, and the Mayo Care Team was not alarmed. In fact, my stamina is likely to decrease further before I hit bottom (around Tuesday or Wed) and start to rebound. So I'm preparing myself for All Ahead Slow on my engine setting his week.

I completed the crossword puzzle with Susan and Ceilee yesterday, and not much else. Though Susan had only left Rochester last Monday evening for a break from every day duty as my primary care giver, she couldn't resist sneaking down from Duluth for a 26-hour appearance on the weekend, and I'm glad she didn't. She has come to mean so much to me that my heart was filled with joy immediately as she arrived early yesterday afternoon. Yippee!

The three of us (with Ceilee) celebrated my extended appetite and energy Saturday evening (before today's diminishment) be eating at an Irish pub called Whistle Binkie's (amazingly enough, there are two locations in town), that featured Scotch eggs and Irish Stew. While the food was average, the ambiance was delightful and we laughed a lot—and that was good enough for us.

As July segued into August, I was up in the night a lot, somewhat disoriented, but never nauseous. It was kinda surreal and floaty, but I'd rather have just slept right through it. Today, at blood draw the nurse had trouble getting blood to flow from my Hickman port which meant fooling around with it at Mayo. The point of having a port installed is to facilitate blood draws, not complicate them, but sometimes it doesn't work that way. Oh well.

Annie arrived today from Floyd VA, and it was great adding her smiling face to the room. She'll be here for a week, overlapping with Ceilee for the next two days. Tonight Ceilee grilled pork chops, corn on the cob, brussels sprouts, and jalapeño poppers. Olé! I only ate about half of mine but that was plenty of calories for this recovering boy.

Meanwhile, Ceilee has been mildly inveigling Annie and I to get involved in Pokémon Go. Apparently he's been able to collect and capture goodies on his smart phone just traveling back and forth from Transplant House to Mayo's on my mundane daily transits. Those little darlin's are everywhere, and it just looked like sidewalks to me. While it's highly unlikely I'll get sucked up in the rush, it doesn't mar my vicarious enjoyment on Ceilee's behalf. He could be doing worse things, such as trying to make sense of Donald Trump's recent attack on a gold medal winner.

For me it's mostly a quiet day of recuperation and trying to regain strength. I am incredibly thankful to be surrounded by loved ones at this time.

The Garden of Autism

New listings on ic.org -

Website: http://www.thegardenofautism.com City: Westwood State: New Jersey Zip: 07675 Contact Email: thegardenofautism@gmail.com Content Phone: 2017770231 Contant Name: Carlo Moralishvili

Cohousing, dall'Italia e dall'estero esempi di abitare sostenibile - EdilPortale

Cohousing News from Google -


EdilPortale

Cohousing, dall'Italia e dall'estero esempi di abitare sostenibile
EdilPortale
01/08/2016 – Vivere in un appartamento di dimensioni ridotte e condividere gli spazi comuni come zone lavanderia, ampie cucine, sale hobby, giardini e biblioteche. È il cohousing, un modello di insediamento abitativo nato negli anni Sessanta nel Nord ...

Ground broken for senior cohousing unit in Port Townsend area; a first of its kind, organizers say - Peninsula Daily

Cohousing News from Google -


Peninsula Daily

Ground broken for senior cohousing unit in Port Townsend area; a first of its kind, organizers say
Peninsula Daily
PORT TOWNSEND — Ground has been broken on Quimper Village, a cohousing unit for seniors, the only one of its kind in Jefferson County — and, organizers say, the first in the state. The first dirt was turned July 14 for the estimated $10 million ...

Cohousing communities take neighborly bonding to another level - Atlanta Journal Constitution

Cohousing News from Google -


Atlanta Journal Constitution

Cohousing communities take neighborly bonding to another level
Atlanta Journal Constitution
From playing together to weekly meals, residents in Georgia's two cohousing communities, East Lake Commons in Decatur and Lake Claire Cohousing in Atlanta, desire to live more connected lives. The Cohousing Association of the United States, ...

With Nary a Cross Word Spoken

Laird's Blog -

Today is Day Zero, or Transplant Day. In a process that took about 10 hours I received back half of the stem cells that were carefully extracted from my bloodstream last week. They are the colonizers being sent back to reboot my bone marrow after wiping out the cancer lurking there with melphalan two days ago. Around 60 days from now I'll find out how much good it's done me (that is, how far the cancer has been placed into remission). 

Until then, my job is simple: recover from the chemo as quickly as possible. There are no more procedures to go through. Today was the last one (barring the unhoped for event of a setback of some kind, say an infection while my immune system is down).

While I have so far been able to proceed nausea-free (which I'm celebrating while I can—Ceilee is grilling chicken breasts for dinner tonight!), I noticed that my breathing was much more labored returning to Transplant House this afternoon. Energy loss was a predicted side effect of the chemo, and it appears that it's here. I'm concerned that loss of appetite and the onslaught of diarrhea may be next. We'll see. The nurses have assured me that there is considerable range among patients regarding side effects, and I remain hopeful that I'll be able to dodge the bullet on some of them. It's all part of the mystery.

As Joy, the Mayo dietician, has told us stem cell folks, "If you're having a good day, then you're having a good day; take it one day at a time and don't let worry about tomorrow cheat you out of enjoying the present."

I had a thoroughly good connection with my sister, Alison, this week, and today we executed anther caregiver shift change. Ceilee caught a red-eye from Los Angeles last night and arrived in Rochester around 8:30 am. While I was going through my 10-hour marathon treatment at the clinic, Alison oriented Ceilee to Transplant House routines and got him settled. Alison is now en route back to Chicago, and Ceilee is in the TLC saddle for his father. It will likely be an early bedtime for both of us tonight. given that transplants simultaneously put a lot into a person (in my case healthy stem cells) and take a lot out of a person (energetically).
• • •The image above was take yesterday by Alison in the Transplant House dining room. It exposes one of my main coping mechanisms (and recreational pastimes): working the daily New York Times crossword puzzle. The one above was from Thursday, typically a medium level degree of difficulty. Puzzlemaster Will Shortz (of NPR weekend fame) follows a sequence whereby Monday puzzles are the easiest to solve and get harder from there, peaking out on Saturday. The larger format Sunday puzzle (a 21x21 grid instead of the 15x15 grid for all other days) is usually about the same degree of difficulty as a Thursday.

Susan and I tackle the crossword puzzle together every day (or at least every day that we're together). As we have complementary areas of arcane knowledge, there is a synergy about teasing out the answers as a team that we both enjoy and serves as so much frosting on the cake of our tasty relationship.

If we can complete the puzzle without resorting to Google searches, then we award ourselves a star (which, along with $4, can get you a really good cup of coffee). It's quite hard to get a star on Friday or Saturday, but we keep trying and we're gradually getting better.

I like crosswords for a number of reasons:

o  To be good at them you need to be able shift perspectives with ease. This skill matches up well with what you want in a professional facilitator—which happens to be my line of work.

o  While it may be of dubious cosmic value to be able to hold and access a large RAM in one's brain, you get rewarded for lateral thinking, and being able to integrate knowledge about a wide range of topics—all the while polishing one's credentials as a prototypical Renaissance person. Can we have too many people in the world who are good with general knowledge?

o  Facility with vocabulary and spelling—two underrated skills in the era of spell check and tweet speak—get rewarded.

o  Unless it's Monday or Tuesday (when we can often blast right through in one pass), it turns out that letting a roadblock incubate is a good strategy. As near I can figure out we are susceptible to mental gridlock from time to time (where we cannot get out of an unproductive rut), and pausing to let it marinate in our subconscious turns out to be a surprisingly effective strategy—when you come back an hour later or so, you can often see it differently and achieve a breakthrough. I like that I can access some portion of my intuitive brain when the rational part falters.

o  I get to work with a pencil (preferably a 2.5 HB, if you please), a tool that is otherwise falling into disuse. Thus, I'm doing my small bit to assist in its making a comeback. 

o  Doing crosswords does not promote the use of cross words—unlike reading about national politics, say. While there is no doubt that crosswords can evoke a certain amount of teeth gnashing, there is far more laughter and delight, such as when a clever clue is unmasked and interpreted appropriately.

o  You learn stuff. (If nothing else, at least how to be better at crossword puzzles, or how to think like Will Shortz.)

Of Shoes and Ships and Sealing Wax…

Laird's Blog -



Here's a picture taken yesterday of my sister Alison and me in the foyer of the Mayo Building. Notice my ubiquitous devil bag by my feet, against the backdrop of the spectacular 13-piece Chihuly glass installation suspended from the ceiling behind us. 

[My daughter Jo took a look at this image and texted back, "Please tell Laird that he needs to pull his pants up higher so that his waistband is in his armpits.

Gearing Up for Chemo

Laird's Blog -

It's the weekend. For Susan and I that means a couple day off—as in no medical appointments—before action resumes Monday, when I get a central port placed high in my torso (to ease blood exchange for the chemotherapy to come) and a sample of belly fat taken to test for amyloids (see more about this new wrinkle below). 

Good news for ducks and flower beds. It's raining steadily as I type and that's supposed to keep up all day. That makes it a good day to not walk to the clinic, and a good day to compose a blog. Susan and I had been hoping to stroll over to the farmers market this morning, but we gave up on that idea once the skies opened up.

We saw Dr Buadi yesterday. He's the hematologist overseeing my stem-cell transplant. All systems are go for my receiving the chemotherapy Wednesday (melphalan), to be followed Friday by the reintroduction of my stem cells. In the parlance of my Bone Marrow Transplant (BMT) Team, next Friday will be dubbed Day Zero. While Susan and I had been hoping this timetable would not have been so stretched out (six days between the completion of stem cell collection and the chemo treatment), we are grateful for the down time together this weekend. 

My sister Alison is slated to arrive late Monday morning (July 25) to tag in as my primary caregiver, allowing Susan to drive back to Duluth that afternoon. She'll have 10 days or so at home to catch up on work at church, to get a break from Mayo coffee, and to convince our dog, Lucyie that she's still loved. She'll then return in time to take back the caregiver baton from my dear friend, Annie, who will be in charge of Laird duty Aug 1-8.

From Day Zero onward my routine will be the same every day. There will be a visit to the clinic so that the BMT Team can get eyes on me to make sure everything is proceeding on course. This is important because I will be immune-suppressed after taking the melphalan, and therefore susceptible to catching random germs and diseases that a normal body could shrug off easily. If there's a complication, my BMT Team wants to be right on top of it.

When I first tried to imagine what the transplant would be like, I pictured a challenge similar to what I went through in Feb and March, recovering from getting knocked flat on my ass by both severe back pain and my body's response to the early cancer treatment. Last winter I wrestled with being bed ridden and learning to walk again. After talking with Elsie Martin though, a friend who went through a stem cell transplant 2-1/2 years ago, also for multiple myeloma (MM), she reported how important it was to her to have the goal of walking at least one flight of stairs every day. I thought, huh? I didn't attempt stairs until returning home after almost seven weeks of hospital and rehab therapy last winter.
But this will be a different deal. I will be attempting to not lose the ground that I have carefully gained since Feb, and that means I need to keep moving. To be sure, it needn't be fast; I just need to keep using my legs, because that will get me home faster. Conveniently, I have one flight of stairs separating my room at Transplant House from the kitchen/dining room, so I may adopt the same post-transplant recovery goal as Elsie did. If I am able to walk to my daily appointments at Mayo (as I have so far), so much the better.

In any event, I'm looking forward to moving on to this next and final stage of the transplant process (in the spirit of, you can't get done until you get started). I have a comfortable setting, a terrific care team, and top-notch medical assistance. Let's get 'er done!
• • •Now back to the amyloids. There was modest (inconclusive) evidence that I may have an incipient problem moving me in the direction of amyloidosis. This is a relatively rare, but serious disease that involves the accumulation of unwanted protein fragments (called fibrils) that the body has trouble disposing of. These fibrils can aggregate and interfere with normal body functions. While this disease can present in a variety of forms, one version compromises the kidneys and heart.

With that possibility in mind (because I need my heart and kidneys to be hitting on all cylinders as I continue my battle with MM), Buadi ordered tests to take a closer look for amyloids. Because they are rare and show up in many forms, they are difficult to diagnose. Nonetheless, it is a measure of my doctor's thoroughness that he's checking anyway.

On the good side, my kidney functions have steadily steadily improved from their dangerous low point when my cancer was first discovered in late January (I was only functioning on 20% capacity at that time and was close to renal failure), and that kind of improvement is contraindicated in the presence of amyloids. So the early evidence is mixed, and I think the best way to see this is my doctor is being prudent. While I don't want there to be any more complications, I want my doctors to be looking in case there are. Who would want it any other way?
• • •It looks like an all-day soaker today in Rochester—a good day to read or go to a movie as I keep building strength for the weeks ahead.

Getting Turned Inside Out

Laird's Blog -

I've now completed three days of apheresis, having collected 4.4 million stem cells on my way to six. (Although the transplant will use only three million, my doctor wants double that amount in hand in case a second transplant is indicated.) While I'm getting tired of being a pin cushion (think lots of IV sticks and belly pokes) the end is in sight. With luck, I'll inch across the finish line tomorrow.

I awoke today to scary news. My brother-in-law Norm suffered a stroke yesterday, and his wife (my sister Tracey) went to bed last night with Norm in the hospital, not being able to talk. We got a brief note from her first thing in the morning apprising us of the situation. Fortunately, Norm recovered his speech later today. While they're still testing, it appears he'll have a full or nearly full recovery. Whew. It's sobering to be reminded that serious health challenges can strike any of us at any time.

On a positive note, there is a riot of flowers in bloom in downtown Rochester (after all, it's mid-July) and it's a multicolored joy to walk the pathways that Susan and I traverse between Mayo Clinic and Transplant House each day. Further, Rochester is an exceptionally clean and friendly town, and from the eighth floor of the Eisenberg Building (where apheresis is conducted) we have a nice panoramic view of the north side of the city in full green raiment. Today we got a bonus as storm clouds rolled through all morning. Though it didn't rain, the view was spectacular.

Looking back over my first 10 days in town, it's been wonderful having so much time with Susan (who is taking time off from her regular duties at St Paul's Episcopal Church to be my primary support person). Starting next Monday Susan gets relief as Alison, Ceilee, and Annie takes turns covering the next fortnight. While I'm anticipating good connections with those loved ones as well, it's been precious sharing with Susan all of my fears and joys as I surrender to the fast water of the transplant process, trusting the sturdiness of our intimate canoe to see us safely through. It is, after all, a big deal. Our future is at stake, and I hold dearly the hope of being able to enjoy substantial time together in good health.• • •Mayo Clinic thoughtfully offers apheresis patients access to movies while they go through the five-hour collection sessions. Monday we watched The Intern (a lovely comedy with Robert De Niro and Anne Hathaway). Being an older guy myself it was touching watching how De Niro portrayed a 70-year-old widower who was not yet done with making a contribution in the world. I admired his patience working in a company run by people who were a generation younger than himself—available to give advice if asked, but never pushing it. Without rancor or ego, he gracefully accepted the role of office intern after retiring from a successful career as a business vice president. He simply wanted to be back in the action and knew how to be a team player.

The action hinges off a personal crisis for the company founder and CEO, Jules Ostin (Anne Hathaway). She loves her company (an online fashion start-up) but the long hours take her away from her daughter and stay-at-home husband. The neglected husband has an affair, Jules finds out, and feels she has to choose between a job she loves and the family she loves. In the end, hubby repents and Jules gets to keep both, but left unexplored is how that adds up. Where are the extra hours needed to do both well going to come from? The movie got right up to the crucial question and then ducked.

Tuesday we saw Spectre (the latest James Bond thriller), and today we caught Star Wars: The Force Awakens (episode VII). Sandwiched between these two escapist thrillers (where once again, wouldn't you know it, good triumphed over you know what at the last possible moment), we enjoyed Inside Out, a delightful Pixar's release from last year. (Does Pixar ever produce a bad movie?) While I'm not sure that catching up on movies you missed first run is an even trade for having cancer, it's at least a sliver of a silver lining.

The best of the bunch was the animated film, Inside Out, which I had never heard of but Susan knew to be a winner. The concept is what's happening in the consciousness of an 11-year-old named Riley as she tries to integrate her five primal feelings: Joy, Sadness, Fear, Anger, and Disgust (think of a team of five trying to cooperatively resolve how Riley should respond in any given moment, with Joy as the team leader, but not necessarily always in control—it was hilariously insightful). 

The film's dramatic crisis occurs when Riley (an only child) and parents leave their happy home in Minnesota to explore a new life together in San Francisco. Riley stumbles out of the blocks in her first day at her new school, and this movie brought me to tears as Joy learns to make friends with Sadness, helping Riley reunite with her parents—rather than trying to keep Sadness confined to a small circle where she doesn't touch much.

What a delightful way to introduce the concept of emotional health—something we all struggle with, not just 11-year-olds. While Riley's brain worked overtime to make sense of her conflicted feelings toward her parents (why did they take her away from the Land of 10,000 Lakes, where everything was going so well?), it triggered sympathetic tears in me about my complicated relationship with my father, where I struggled mightily to understand my emotional responses (and his).

Anyway, that's what I noticed during cancer treatment today. What's it going to be like when the hard part comes?

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