living her best life: #57…pat’s new normal

Just the other day someone asked how my sister-in-law Pat was doing after her recent stem cell transplant at the Mayo Clinic in Minnesota. It reminded me that I’d not posted about her ongoing battle with multiple myeloma and amyloidosis in some time.

Not a day goes by that I don’t think about her, it’s just that I’d not been posting anything in quite some time. When I sit down at my laptop for any extended period, I tend to lose track of time and forget about everything else. In deciding to see to other areas of my life, I’ve resisted my passion…to just write.

Pat is doing well. She’s not perfect, but she’s on track…feeling healthy and looking forward to what each day brings. She’s returned to work. Yes! She’s back at work. She’s eating as best she can, given that her molars were extracted. From a photo she texted me a week or so ago, Pat’s smiling broadly. And best of all, her sense of humor is still intact.

When I asked if she wanted to reflect upon her time in Minnesota, Pat replied…

I haven’t really reflected yet on everything I went through at Mayo. Part of me doesn’t want to relive it and the other part thinks “Oh. That’s old news. I’m looking more toward the future…the uncertainty of it is a little scary so it’s still a challenge. I’m thinking of going back to work next month…I wish I could just retire and know that everything will be fine. On the other hand work keeps my mind sharp and occupied.

A week later, she wrote…

We are all doing good here…keeping an eye on the approaching hurricane. I’m feeling stronger every day and am planning to go back to work on Tuesday. I figured out the best time of day to take my meds to optimize how I feel during the day. I just have to remember to be careful in crowds and stay away from sick people. I’m back to “I don’t feel sick” which is good, but I have to remind myself that I’m not in the clear yet.

What’s next for Pat? 

As I understand it, she’s looking forward to the 100th day-post-stem cell transplant…and what it brings. She won’t need to return to the Mayo Clinic, instead she will meet with her own physician in Hawaii. Meanwhile she will be on one medication til then, and at least two others for the next year.

Once she left Rochester and the Mayo Clinic back in August, Pat and Brad spent a few days in Duluth, Minnesota, before heading to Minneapolis where they caught their flight home.

We are enjoying ourselves in Duluth right now. From our room we can watch huge ships roll in night and day…it’s pretty amazing. Lake Superior is pretty cool too. If I didn’t know better I’d think it was the Atlantic Ocean. Being here is therapeutic, nice bright room, lots of sunshine and a body of water that reminds us of home. We’re staying one extra day here.

We are in Minneapolis now…big city…long gone are the fields and fields of corn. Duluth was very therapeutic and I’m glad we went there. Now that we’re in the city we have the opportunity to go to concerts or shows but I don’t think I’m up for that. Theaters and shopping are close by and we are near Target Center (basketball arena?) and where the new stadium for the Vikings is being built. Neither team has anything going on…thought we would catch a ball game or football training camp practice. Well I’m really ready to go home…the sisters and my mom-in-law are going over on Saturday to clean. Julie’s also going to clean out my fridge and do a little shopping for me. I also asked if Dennis could make some pork with squash…yes, my appetite is back full force but my tongue is still swollen so sticking with soft foods and lots of soups.

So “How’s Pat doing?” Well, she could be better. She’d probably prefer it if she could revert back to her old normal. Yet that’s not how my sister-in-law operates. Pat pretty much goes with what’s on her plate. She’s acclimating to what’s been dished up without a whole lot of whining and complaining. It could be her island mentality…her Catholic upbringing…being the youngest of twelve..the mother of two teenage boys…or having awesome parents as role models. It’s more likely a combination of all these factors.

All I know is Pat’s become my role model.

Life is about change, good or bad. Better to accept that as fact and work with what we’re dealt at any given time. None of us can go back to the old normal. It’s always being tweaked…by us or by fate. We can make life good…or we can make life hell. It’s up to us.

I count myself lucky to have someone in my life to show me how it’s done.

…thanks, pat.

………hugmamma.

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living her best life:#56…hawaii bound

Yesterday Pat text me some great news …

Wanted to update you…I’m doing really well.

We meet with Dr. Gertz tomorrow and expect him to release me. If that happens then that means we can go home! [whoopee!!!]

Because our flight is not until the 8th we’ll have some time to play tourists again. The plan is to check out of the Transplant House on Monday and drive to Duluth near Lake Superior for a couple of days and eventually be back in Minneapolis near the airport before the weekend.

Can’t wait to go home [!!!!!]

Without a doubt…

…pat’s living her best life…

………hugmamma.

living her best life: #55…can’t wait!!!

I text Pat today…

How are you? Whatcha doing? I am headed to the antiques shop to put some stuff. [I sell antiques/collectibles at an antiques mall.] Armsful of hugs…

And Pat text me right back…

Hi…actually just had lunch and am ready for a nap…can’t take the Hawaiian outta this girl! [tell me about it] I’m eating more of my meals as opposed to drinking them. My numbers are continuing to go up and I’m feeling much better. They stopped a bunch of meds…woohoo! [double woohoo!!!] 

I have a followup appointment with Dr. Gertz on Friday along with the transplant coordinator. This is to go over what to do at home [home…yahoo!!!] for the next 100 days and thereafter. Usually patients return on Day 100, but I’m pretty sure that appointment will be with my oncologist back home.

Not sure when Dr. Gertz will actually clear us to go home but our flight is scheduled for the 8th. [yippee, yay yeah!!!] 

If we have a few days we’ll leave the Transplant House and maybe drive to Duluth. In any case we’ll be in Minneapolis the night before our flight so we won’t have that long drive.

Looking forward to going home!

Quite a woman, my sister-in-law. The way she tells it…it’s just another day in the life of. And yet we all know it’s been anything but. I’m sure Brad would have more to say about the journey he’s traveled with Pat. Knowing the two of them as I do though…

…she’ll go back to work, and he’ll go back to fishing…and their sons will enjoy having mom and dad home again.

…all our love and prayers go with them.

………hugmamma.

living her best life: #53…feeling run over

…by a Mac Truck! 

Hi [hugmamma]…

Don’t know if you’ve gotten any of my text responses…thought I’d just send a quick update.

They say I’m doing well and I’m right where I should be. Even so, I still feel like crap. One doc described it as being hit by a Mac Truck, and then the truck backs over you and finally dumps its load on you.

That about sums it up.

There are moments in between when I feel somewhat normal, but those moments  don’t last very long.

Today is Day 8. I won’t go back and describe the past few days because I’m concentrating on moving forward and I’d rather not relive the past…not yet anyway.

I’m at the point where my body is trying to replace platelets so I can be weaned off the antibiotics, and anti-viral and anti-fungal meds. I think that’s right. I just know my body has to start fighting back on its own now.

That’s all for now…going back to rest.

I love you.

Pat

…and we all love you and brad…and continue to pray for you both.

………hugmamma.

living her best life: #52…in it together

Today I text Pat…

Will post something today. Always thinking of you both, hoping you’re fine. God bless you for your strength and no nonsense ways. How are the boys? How’s Brad? How’s living been with others? I love you…

And  she text back…

I think the boys are fine…haven’t been up to texting them either. Doing okay…not great…passed out this morning in the shower so had to be admitted for observation. Prior to that I was doing pretty good. Just exhausted and constantly foggy. Thank God I have Brad with me.

Living with others has been great…it really does help both the patient and caregiver.

…God bless the mayo clinic…all the folks at gift of life transplant house

…and especially pat and brad.

………hugmamma.img_4416.jpg

living her best life: #51…a little tough

The easy banter has subsided. A more somber tone replaces Pat’s heretofore lightheartedness. Can’t say I blame her. In fact, how she’s remained so cool, calm and collected until now is something I can’t fathom. I’m sure most of us would give in to a little belly-aching now and then. Not Pat. The woman doesn’t know belly-aching. The day they left us on their way to Minnesota, Brad told me that, except for a few brief moments of frustration, Pat never complains. Doesn’t surprise me.

Ask any of the so-called “outlaws.” Our spouses, all siblings, are almost saint-like. We “outlaws” keep our better-halves anchored to earth with our very human failings. We like to think of ourselves as…merry-makers. We’re always…always…making merry.

On 7/17, Pat texted…Hi [hugmamma]…I think I’m doing pretty good…considering. Just tired most of the time, taking things now day by day, moment by moment. Feel pretty groggy for the better part of the day, trying to eat and drink more but it’s hard. Trying to also manage my meds…which is the toughest part. Doc says I’m doing good but they still talk about the low point being 12 days out as my counts continue to drop. So I don’t know if feeling good at one point in the day is a turning point or just a good moment to be embraced while it lasts. All I know is I can’t wait to go home. Love to you and [my brother].

On 7/18, yesterday, Pat texted. 

Hi [hugmamma]…thought I’d send a quick update…haven’t felt much like posting or journaling lately. Today is Day +5. I take a blood test every morning and meet with a nurse and doctor to go over any problems, side effects etc. I also go in morning and night to get anti-nausea meds through my central line.

Luckily Dr. Gertz has this month’s rotation so I see him often. According to him I’m doing as well as can be expected. Although now we have to watch even closer for any signs of infection. I’m basically at the half way point to the bottom…another 5-6 days and I should be at the turning point when my stem cells will start taking over and I’ll start feeling better. I don’t do much but rest when I can.

Brad has been great…he does everything from making my meals, to keeping track of my meds, water and food intake plus washing clothes and especially encouraging me by counting down the days and reminding me that i’m doing well.

This is not easy but it’s bearable knowing that everyone is praying for me back home. I hope you can post an update but if not, maybe you can just forward this text to the rest of the family.

I love you…Pat.

…and i love you…we all do.

………hugmamma.

THIS is the real ME! ... I pinky swear...

THIS is the real ME! … I pinky swear…

 

living her best life: #50…more girl talk

On 7/11, Pat texted…Hi [hugmamma]how exciting to be planning [a] wedding. We are looking forward to visiting Nashville next year.

Right now I am lying in bed getting the infusion of chemo…almost done. The bad side effects (IF ANY!) will start after a few days. Just gotta get through the next … Sorry…nurse came in and we are done. Heading back to the house…will text or email later.

Hi[hugmamma]got back to the house and took a nap…ready for some food now…always ready to eat. Have to make the most of the good days…thank God havent’ had any bad ones yet. 

So what is [your daughter’s] color scheme? Will the maid of honor and bridesmaids wear different dresses in the same color palette? I like that trend. So as the bride’s parents are you planning everything or are [the groom]s mom and sister helping? Just don’t get too stressed…did they set a date? I doubt you will get back to Hawaii between now and then so at some point I will get all the aunties and cousins together for a bridal shower…Hawaiian style…we’ll videotape and send it to you.

To which I replied…That is sooo beautiful. Made me cry. Been crying off and on…hormone therapy…oye vay! Also watching Hallmark Xmas tear jerkers…besides which I’m realizing that I’m losing my daughta. No more inside family jokes among the three of us. Have to mind my p’s and q’s…at least til I get really comfortable with [SIL.] He’s very nice…but we’ve only been with him twice now…in close quarters, for sure. Anyway, thank goodness I’ve you to confide in. You know [your brother]…don’t worry, be happy. Thank God, you [and your siblings] are so laid back.

Because [SIL and PIL] plan a trip to Hawaii, with our help, I am sure they’d really appreciate you’re all…whoever wants, of course…to contribute to their honeymoon fund. As you might guess, they have all the household goods they need…and clothes…since [PIL] has lived on her own for 11 years. Again, only a suggestion. 

Continue to pray you stay under the radar as far as the effects of chemo goes. How’s Brad doing with being the “hausfrau”??? hugs…

To which Pat replied…That’s a great idea…we can do a “bring them home” theme. 

Brad says the mistress of the mansion has not yelled at him yet…we do pretty good together…must be that “don’t worry, be happy” thing. For now when I watch movies, they are all comedies…I’m thinking of streaming the old Carol Burnett Show…

Then me…You and Brad haven’t had to put your feet in a kiddie pool yet? [hugmamma here: I had kidded Pat a while ago about visiting with her in Minnesota and the two of us dangling our feet in a plastic kiddie pool to cool off in Minnesota’s hot, humid summer heat.]

Then Pat…No…to pretend we’re on a relaxing vacation or because of the weather? It’s comfortably warm here…cooler when it’s overcast.

Me…Just got that..so there’s a mistress of the mansion? Someone who takes charge??? Hmmm…interesting.

[No reply from Pat.]

Today is the first day it’s not sweltering. TG we had our AC serviced. It was starting to poop out.

Pat…It’s really hot in Hawaii too with several tropical storms back to back blocking the trade winds. Luckily, so far they’ve tracked away from the islands.

People see Brad making dinner and serving me…a few have commented to get used to it and make sure he continues to do it at home!

Me…Too many distractions in Hawaii…like fishing and work, of course.

On 7/13, I texted…Love you both…the flowers are lovely, especially since they’re from two of God’s best people on His earth…armfuls of hugs and smooshies!

On 7/17, I texted…How are you doing? Hope you’re okay. Let me know. Love you two…lots!

…and i do.

………hugmamma.IMG_4128

 

living her best life: #49…hanging in there

It’s been some time since I’ve shared Pat’s journey toward better health.  Chock it up to my daughter’s recent engagement…yyyeeeaaayyy!!!…and the current flurry of emails, phone calls and text messages as we try to plan her 2016 summer wedding. We both agree…it would be so much easier if we were both in the same place, instead of 2,000 miles apart.

Meanwhile, my thoughts are never far from my dear sister-in-law and her devoted husband. Wish I were with them to offer quiet support, uproarious laughter, and lots of hugs. Since I can’t be there…posting Pat’s journey is the next best thing I can offer.

Pat’s communication has been sporadic given her full time job taking care of business at The Mayo Clinic. 

On 6/30, Pat texted…I’ll still be sending you stuff that I don’t post myself. There’s so much stuff that I just need to write down so I don’t forget…blogging is hard work. [hugmamma here: Tell me about it! Blogging’s not for the faint of heart. I can’t even keep up these days.] It took forever to write one journal entry and that’s not even getting into the heavy stuff. I’ll send the link again. The website is Caring Bridge. There is a link called “tributes” which can be misleading. It’s donations for Caring Bridge itself and not specifically for me and Brad. It allows people like us to create a free website. Just want to make sure everyone is aware of that. 

We are acclimating…trying to get into some sort of routine. Brad is working, just finished a couple of loads of laundry and making the beds. I like it here…it’s very clean but still homey. [hugmamma here: They are staying at Gift Of Life Transplant House…a home that helps and heals. Mayo Clinic cancer patients live there during their course of treatment. Reservations are on a…first come, first serve basis. Bedrooms and bathrooms are private at a rate of $30/day. The public spaces are shared…including the refrigerator. It’s like summer camp…]

People are very nice and helpful…some have been here for quite a while.

How are things going with you and the family? Has Gary [hugmamma here: Gary’s my future SIL…son-in-law. In fact that’s what we call him. He started calling me MIL…mother-in-law…first…almost as soon as we returned from caring for our daughter during her recovery from the second surgery to repair her bowel wall. Then the running joke expanded to calling my husband FIL…father-in-law. Of course my sweet daughter needed a name, so I called her PIL. So here we are one soon-to-be happy foursome…FIL…MIL…PIL…and, of course, SIL…the guy who started it all.] gotten [my brother] to sit down and talk story yet? What have you been doing and more importantly…what have you been eating? [hugmamma here: Pat knows me too well. And no, I’ve not stuck to my diet. And no, I’ve not been exercising either. So…blah!]

We are trying to see a bit of Rochester [Minnesota] while I’m up to it and able…so we go out every day. Tomorrow we’re going to tour the Plummer House. Dr. Plummer was the first surgeon the Drs. Mayo brought in. Grand old homes where a lot of the first Mayo doctors still live today. It’s called Pill Hill. [hugmamma here: Big chuckle. My daughter’s got a hill named after her…]

Very interesting history surrounding the Mayo Clinic. Well, we’re off to Trader Joe’s…2:30 and we’re just getting out of the house.

Pat provided the Caring Bridge link… http://www.caringbridge.org

On 7/2, Pat texted…Hi [hugmamma] …how are things going? We’re doing good over here…vacation is officially over…got 4 teeth pulled today…told my girlfriend it hurt like hell, but I got a prescription for ice cream! Waiting now to meet with the transplant coordinator. Will have the weekend off…Monday morning I’ll have a central line put in…basically surgery to put in a catheter then a class in the afternoon to educate us on how to care for it. Tuesday will be the start of collecting stem cells. That will go thru Fiday if I need that many days. That’s all that’s on the schedule for now. [Are your daughter and her boyfriend still with you?]

Just found out I don’t get off that easy…nuprogen shots start tomorrow…one shot every day throughout the collection period…the sooner we get started…the sooner we can go home! [hugmamma here: Amen to that, girlfriend!!!]

[hugmamma here: Among other things, I told Pat “Love you. Hope you’re ok. Love Brad too…and the boys…and the dog. Is he still alive?]

Yes the dog and the rabbit are both still alive…the boys are doing fine. Not sure how clean the house is though. We are okay. Love you too…pass it on to your family.

[hugmamma here: So then I told Pat about SIL asking us, FIL and MIL, for PIL’s hand in marriage.]

Congratulations! I can imagine him trying to get a word in before you guys move on to the next thing…does he still have to formally propose to [your daughter]? [hugmamma here: Then we went back and forth about wedding dresses and all that good stuff, which I’ll fill you in on later.]

On 7/7, Pat texted…Weather is warm here too, but I’m usually cold cause we’re always indoors. Our room is on the basement level so it’s a lot cooler…cold. Things are going well here. Did the stem cell collection this morning…collected enough in one day where it normally takes 2-4 days…so we might have a few free days again. Next step is to meet with Dr. Hertz and schedule chemo and transplant.

…lots of hugs and prayers, pat and brad…

…you’re always on my mind.

………hugmamma.Butterfly-Header

living her best life: #48…let’s do this!

That’s what Pat’s been saying for some time now.

“Let’s do this.”

And so she is.

Hi [hugmamma.]  We are doing good.

The first day here was a whole bunch of tests…the worst of it being the bone marrow biopsy. No pain afterwards just a little discomfort. We were at the clinic all day from 7:30 until 4:30 and that was after arriving at the Transplant House at about 2:30 a.m. Needless to say we were both dead tired.

The 2nd day started at 7:30 again and ended at about 5 with visit with an oral surgeon. I get to have teeth pulled! [hugmamma here…Pat’s molars have not been properly aligned for some time now which has impeded her chewing food properly, which has contributed to her rapid weight loss.] Because they are loose and roots exposed, there is a great risk of infection after the transplant so they got to go. I was thinking what else can I get fixed while I’m here? We also got a little tour of the area where they do the stem cell collection and got an education on that whole process and on diet and nutrition after the transplant.

Today was a short day…a meeting with the transplant coordinator and with Dr. Hertz. Everything still looks good and we are moving forward. We have nothing scheduled for the next 5 days (paperwork between Kaiser and Mayo) so we’ll have time to just relax, get used to living in the transplant house and give Brad a crash course on how to turn on a stove! So far so good…Applebee’s is not too far away.

It’d be great if you continued the blog…when you have time. I’m also going to set up a web page where everyone can check on what’s going on. I’ll send you the link before I invite everyone else. 

Living in the house so far has been good. Others here are very helpful…it takes a little getting used to sharing the kitchen space with others. We have to get over feeling like we are guests in some one else’s kitchen. We made our own breakfast for the first time today. Only down side is I can’t just grab a cookie and sit on the couch…no food outside of dining areas…drinks are okay. Brad is doing okay with chores so far because I’m able to help. Gotta get him comfortable in the kitchen…shouldn’t be too hard. Will be heading to Trader Joe’s later today.

Spoke to the boys a few times. They seem to be doing okay. Planning to “face time” with them on Sunday. Maybe I can get them to show me what the house looks like, or maybe I don’t want to know. 

…love and prayers, pat and brad…from all of us.

………hugmamma.

living her best life #47: counting down…

…until I’m home again. That’s what’s foremost in Pat’s mind, having touched down in Rochester, Minnesota only 48 hours or so ago.

After spending a couple of days with my husband and me sightseeing in and around Seattle and its environs, Pat and Brad headed to The Mayo Clinic where they will now spend the next month-and-a-half. To get them off on the right foot, so to speak, we were intent upon wining and dining them and making them smile and laugh until they were exhausted, falling into bed…happy as clams tucked snugly into their shells for the night. And I mean snugly since they insisted on sharing the vintage double bed in our former master bedroom suite-turned- guest suite. They opted not to share our daughter’s queen-size bed, probably because they knew she’d be enroute home the day they left.

Arriving from Honolulu where they reside Sunday evening, we drove to a casual waterfront restaurant where I’d made reservations for us to celebrate Father’s Day. Dining outdoors on the deck was like being in Hawaii, the sun beating down without letup. While the others weren’t bothered by the heat, I almost followed through on the server’s suggestion to check out their souvenir shop for visors. Instead I decided that if Pat could withstand the sun’s rays, so could I. If there’s one thing I’ve since learned from her it’s not to be a wuss.

On Monday we traveled into Seattle from where we live in the suburbs to visit the Chihuly Museum. Pat had asked to see it, and like her fairy godparents, my husband and I wanted to grant her wish. Even though we’d been there before, we did not need to be asked twice to return to the museum again. For those unfamiliar with master glass blower Chihuly, he has become a global phenomenon because of the glass structures he has created to mimic the beauty found in nature. His museum is not to be missed. In fact, seeing it again my husband and I were once more awed by how the outdoor gardens had matured around Chihuly’s glass creations.

Following our tour of the glass museum, we lunched in the Sky Cafe high atop Seattle’s  landmark Space Needle. When asked if she’d prefer…a great view and good food…or great food and a good view…Pat said she wasn’t aware there was a restaurant at the top of the Space Needle. I’m sure she’d agree, the view AND the food were awesome. While dining, the restaurant did 2-3 revolutions showing us all of Seattle a couple of times over as we sat enjoying our meal. Afterwards, we stepped out onto the Observation Deck one level above to enjoy the gentle breezes of the outdoors while gazing down at the rooftops of the myriad buildings below.

Before leaving the city, we headed to Seattle Center’s huge fountain, an attraction for old and young alike…adults chilling while children frolic in the water cascading down from on high after being shot into the air as though from a cannon. Again, Pat remained in the scorching heat with the men as wimpy me sought comfort under the canopy of trees offering shelter from the afternoon sun. Oh well. I am a decade older than my sister-in-law so maybe I can claim old age as an excuse.

To round out a wonderful day, we enjoyed a casual meal at a Japanese restaurant closer to home. It’s always nice to visit with our nephew Kanoa and his wife Erica. The evening was made even more special by their beguiling 6-month-old, Luca. He literally charmed the pants off of all of us…well, at least mine.

When we sent Pat and Brad on their way the next day, it was with armfuls of love and prayers. And I know they’ll continue to need as much from all of us as they prepare for what lies ahead.

…love and prayers, pat and brad.

………hugmamma

living her best life #43: a bright spot…

Pat shared the following with family and close friends just the other day…

Hi everyone,

First want to thank you all for your thoughts and prayers. I hear them and feel them all the way in Minnesota! I was anxious prior to coming here…had a hard time packing for the trip…ended up just throwing a bunch of sweaters and jeans in my bag. It’s cold here!

We were at the Mayo all day yesterday from 8 in the morning until almost 5. Met with the doctor first thing in the morning, Dr. Gertz…I liked him as soon as we met him. Reminds me of a Seinfeld character; reminded Brad of Mr. Weasley from Harry Potter. Everything about the Mayo is impressive, not at all intimidating. Anyway, had to do a few tests…nothing major…and will follow up with the doc again today. Basically, he thinks I’m a good candidate for a transplant. He likes my numbers and the chemo I did back home did what it was supposed to do.

(At this point, the email ended. And then came…)

Sorry, fat fingers. Hit “send” by mistake…

Doc reviewed all my records while we were sitting there and was “unimpressed” by some results. Other results were “unremarkable.” I told Brad being called unremarkable is the best compliment in the world. Means my numbers and test results are normal. We later met with a social worker to go over the psychological part of this whole thing. He and a nurse went into more detail about what happens during the transplant itself, breaking it down almost week by week.

At the Mayo, the time spent here would be more like 5 to 6 weeks as opposed to the 3 months [as I’d originally thought.] It would be on an outpatient basis. So no extended hospital stay unless necessary.

Last thing I did yesterday was an echocardiogram. In order to do the transplant, they need to make sure I’m healthy enough…or specifically that my heart is healthy enough. So we meet with Dr. Gertz in about an hour to go over all the results. Once he confirms I’m a good candidate, he will let my Kaiser doc know and we’ll go from there. 

After today’s appointment we might be done here. If so we’ll probably head to the Mall of America or maybe an Indian casino…or maybe the Spam Museum. So much to do (not!) and so little time…can’t wait to get home…this is not your typical fun-filled vacation. 

Aiden made it home safely. Ethan is getting himself to school, thanks to Uncle Bear, Aunty Steph and Reese. Hopefully, he’s also getting his homework done.

We’ll see you all soon.

Love you all,
Pat and Brad

…and it goes without saying…we all love you two.

………hugmamma.

 

 

even the rich and famous…

Retired NBC Nightly News Anchor Tom Brokaw has multiple myeloma. He’s written a book, A Lucky Life, Interrupted, due out May 12th.

Brokaw conveyed the following to NBC News senior national producer Tim Uehlinger.

ON MY DIAGNOSIS

I have this very good doctor, Dr. Andrew Majka at Mayo Clinic, who thought something was up.

So he did some blood tests and called me into a meeting with the head of internal medicine, who is also a hematologist, a blood specialist. And they reviewed all the numbers. I didn’t really know what they were talking about.

They turned to me and Dr. Morie Gertz said, “You’ve got a malignancy. It’s called multiple myeloma. And you know people who’ve died from it.”

Geraldine Ferraro, the first woman to run for vice president, died from multiple myeloma. Frank Reynolds, the ABC anchorman, who I had talked to toward the end of his life, not knowing what he had, died from it. Later I found out that Frank McGee, who was the Today Show host, died from it.

 

Odd thing is, I guess I didn’t know enough about it at that time, because my heart didn’t accelerate. I didn’t go into a meltdown of some kind. I was very cool about it.

I was kind of in two parts: I was operating as a journalist human being, and the other part was kind of on the outside looking in saying, “This is a big deal, you’ve got to stay cool.”

I didn’t know what I was in for.

I’m a guy who’s had great good fortune in his life. And everything has kind of gone in my direction. And so I couldn’t imagine that I was going to go through the ordeal that it turned out to be.

ON MY FAMILY

Treating cancer is a family cause. My family is not only attractive — I can say that because I’m paterfamilias — but they’re really smart, and they’re very, very compassionate. They’re all involved in one way or another. My daughter Sarah’s the therapist. My daughter Andrea and her husband, Charles Simon, are very active with social causes. My daughter Jennifer’s a doctor.

 My wife Meredith is Meredith. She’s always been very special, not just to me, but to everybody that she’s ever met. I can say that objectively.

ON GETTING INVOLVED IN YOUR CARE 

One of the things that I learned, and I had really good doctors, as individuals sometimes it wasn’t as collective as I wanted it to be.

So one of the things that you have to learn, even if you don’t have the kind of advantage that I do — with the high profile and the access — you have to learn to manage your case. You have to take an active role in it. You either do it yourself, or you do it in conjunction with another physician, who’s a friend, who’s kind of wise counsel, who’s there off to the side saying, “You know, there may be another way of looking at this,” or there’s “I’m not happy with the protocol that they’ve come up with.”

In my case, I did have very good care. And I was able to put together a kind of team approach. And that worked very well for me.

But not everybody can do that. I’m very aware of that. But everybody has to be constantly conscious of the fact, it’s your body, it’s your health, it’s the cancer that’s affecting you.

 Get involved in the fight.

ON MY WORKING LIFE AT NBC NEWS

I didn’t want them to know.

Everybody has a job to do at NBC News. They’ve been my friends, I didn’t want them to think, “Oh, we gotta worry about Tom.”

I had good care going. I had Meredith and the family. And I didn’t want to become the object of some kind of pity, most of all. I didn’t want to show up on the Internet, “Tom Brokaw has cancer.”

It’s just the way I am.

 But it was very, very touching to know how concerned everybody was. When I got the Presidential Medal of Freedom, I wrote to everyone saying, “This is yours as much as it is mine. Over the years you and everyone else has pulled me across so many lines.”

I was touched by that. But I knew what I had to do, was just to concentrate on getting well.

For more information on multiple myeloma, including how you can help, visit The Multiple Myeloma Research Foundation.

living her best life…#37: wabi sabi

Wabi Sabi. A phrase I’ve now heard 3 times within the last couple of months. A phrase I’d never heard before.

Pat’s husband Brad first mentioned Wabi Sabi just about the time she was diagnosed with multiple myeloma and amyloidosis. Then Pat’s sister Mary spoke of it again in an email. I’d been meaning to bring it up in a post, but never did. And so…the “third time’s the charm.”

A Blog for Humans at   https://tomrains.wordpress.com/2015/02/19/sehnsucht/  defined Wabi Sabi as “a Japanese philosophy concerning the beauty of imperfection.”

The beauty of imperfection. 

Describes Pat’s life at the moment…at least insofar as how Pat is living her life…in light of her health issues.

Life really is as the Japanese perceive it…Wabi Sabi. 

Beautiful in its imperfection.

Following is an email from Pat updating her “imperfectly beautiful life.”

*****************************************************************************************************************************************

Hi [hugmamma…]

How is Sitka doing? I felt so sad reading your post about him. It was really hard when Lady died. It took a while but I’m finally ready for another dog, but the timing is just not right. And how is the renovation going? Smoothly, I hope! I’m not sure if my text messages from my phone are going through, so wanted to give you another update, as things are starting to move forward…

First things first, though. Had an enjoyable, busy weekend. Saturday was a bridal shower for John’s (my nephew) fiancee, Estee. Then we got together on Sunday at Johnny’s (my brother) because Carol and her family are in town for the week. Any time family’s together is a good time…

I’m still working 3 days a week and will start doing half days on most Thursdays. Basically, I’m running out of sick leave and vacation time! There’s a “shared leave” program at work where co-workers can donate leave. My boss says there’s a lot of interest from people at work who want to donate, so I’ve put in a request and hopefully will get some additional time. I’ve also put in for leave without pay for June – August. I will be able to keep my medical benefits as long as I pay my premiums, so I wanted to make sure to set that up.

We just got a letter from the Mayo Clinic scheduling my first appointment for May 11. Chemo is scheduled to end Wednesday, May 6, so the following Monday we’ll be in Minnesota. The Kaiser transplant coordinator told us Mayo said to plan on staying for 2-3 days. That doesn’t help us much so we are trying to get more details before we make our travel arrangements. I have 2 appointments the first day we’re there which look like a consultation and possibly a bone marrow biopsy. Kaiser has said all along that the Mayo Clinic will most likely want to do their own tests, etc. So there could be additional appointments while we’re there.

Brad and I still have so many questions, as well as a lot of preparation for the trip and beyond. 

Ethan will still be in school. Need to make arrangements for him to stay with Brad’s sister. Aiden is due to return home on May 10, so we’ll be crossing paths in the air. What’s unknown is how soon after this first trip we’ll be returning to the Mayo Clinic for the actual transplant. We’ve learned that they won’t want to wait too long from the time I end my chemotherapy before starting the transplant process. So we’re guessing we’ll fly home only to fly back soon after. Not so easy when traveling from Hawaii!

It’s still a little ways away, but I get anxious if I think about it too much. Just have to take it one day at a time, because…

…life goes on…things needing to be done this week…a meeting with our tax consultant…chemo treatments…

…and things to look forward to…John and Estee’s wedding in a couple of weeks…the annual Easter brunch at our house.

Maybe we can talk on Wednesday or Thursday morning? Chemo on Wednesday is at 1 p.m. 

Anyway, must be going. Trying to gather all our tax papers for tomorrow’s meeting.

Love to you and the family,

…and all my supporters…

…pat…and hugmamma.

 

journeying towards her best life…#3

Pat has been diagnosed with Multiple Myeloma. According to the staff at Mayo Clinic…

Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs.

Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells. Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause kidney problems.

Treatment for multiple myeloma isn’t always necessary. If you’re not experiencing signs and symptoms, you may not require treatment. If signs and symptoms develop, a number of treatments can help control your multiple myeloma.

Yesterday she received her first chemotherapy treatment. At some point in the future, she may be a candidate for a stem cell transplant.

As if MM wasn’t a plateful, Pat is simultaneously suffering from another rare disease, Amyloidosis. Here again is how the Mayo Clinic staff defines the disease…

Amyloidosis (am-uh-loi-DO-sis) is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ.

Amyloidosis can affect different organs in different people, and there are different types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis can lead to life-threatening organ failure.

There’s no cure for amyloidosis. But treatments can help you manage your symptoms and limit the production of amyloid protein.

You’d never know from Pat’s composure and sense of fun that her body is being undermined by such fiends as these. It’s her fervent wish and mine that having you along on her journey will offer hope and resilience to those in need. Whether you suffer similar afflictions or know of someone who does, she’s here to say…

…you’re not alone. 

…pat hugs you…as do i.

………hugmamma.

 

 

details…little known facts

Secret Service agents in response at the assas...

Image via Wikipedia

In summing up what I’ve learned about President Ronald Reagan and First Lady Nancy Reagan from reading I Love You, Ronnie, a couple of details came to light which I’d not known before. And according to Mrs. Reagan, only those close to what occurred at the time, knew. The first dealt with the assassination attempt on the President’s life 3 months after he took office. The second was an incident that probably caused the premature onset of his Alzheimer’s. Only a handful, it seems, were privvy to both occurrences.

Waiting for news, Nancy Reagan sat with Sarah Brady, whose husband Jim had also been shot in the attempt on the President’s life.

As we waited, I looked out the window and saw how, in the buildings all around the hospital, people had thrown sheets out the window saying things like GET WELL, MR. PRESIDENT and WE LOVE YOU, MR. PRESIDENT. Every now and then, a nurse would come and report to me on Ronnie’s progress. At first, the doctors were having trouble finding the bullet, which was a devastator bullet, the kind that explodes inside. One time, the nurse came and said, “We just can’t seem to get it out. We may just have to leave it in.” Well, that didn’t sound so good to me. And then another time, she said, “They’ve found it, but the doctor is having a hard time removing it–it keeps slipping from his fingers.” Finally, she came back and told me that the doctor had gotten it out, but I almost lost him then. The bullet had been lodged an inch from Ronnie’s heart.

We were lucky–we didn’t realize how lucky, in fact–because when Ronnie had arrived, all the doctors were in the hospital for a meeting. No one had to be called in. Everyone Ronnie needed was right on hand, and there was no waiting. …

I wanted to stay there all night, but the feeling was that it would be better for the country if I left and went back to sleep at the White House. Otherwise, people would have assumed the worst and there would have been panic. As it was, Ronnie’s aides had to do all they could to calm the country down. The briefings made to the press were partial, to say the least. The assassination attempt was really a much closer call than people were led to believe at the time. Everyone was trying not to frighten the people in the country, but the fact was, Ronnie almost died. It was a miracle that he didn’t. And I knew all along how serious things really were. …

Needless to say, I was terrified. After the shooting, every time Ronnie walked out the door to make a public appearance, my heart would stop–and it wouldn’t start again until he came back home safely. Ronnie knew how scared I was. But if he was frightened too, he never let me know it. As always, he was cheerful and optimistic. God had spared him, he believed; there had to be a reason why. By making jokes…he tried to take the edge off my fear.

The Reagans wave from the White House after Pr...

Image via Wikipedia

Who could fault the First Lady’s hovering over the President thereafter? No wonder her seeming control of his life, personal and public, for which the media liked to criticize her. I know because they had me convinced she was running the country with her husband, an unofficial cabinet member, as was constantly written and spoken of in the news. How the spinmeisters love to slant the facts. Readers, beware!

Fast forward to July 1989, after the Reagans had left the White House. Visiting with friends Betty and Bill Wilson at their ranch in Mexico, the President went riding. An accident occurred.

Ronnie had been thrown off his horse. He was riding with some other men, going up an incline, when one of the ranch hands had hit something that made a loud noise and spooked Ronnie’s horse.

The horse reared once, and Ronnie stayed on. It reared a second time, and Ronnie stayed on again. Two Secret Service men tried to move in and calm the horse, but they couldn’t do it. The horse reared a third time, bucking so hard that Ronnie fell off and hit his head on the ground, miraculously missing the jagged rocks all around.

President Ronald Reagan

Image by edalisse via Flickr

We got him on a plane and immediately took him to a hospital in Tucson, Arizona. He should really have stayed there, but it was my birthday and the Wilsons had planned a celebration, and Ronnie was determined to go back to the ranch. We went back–but at my insistence, we took a doctor with me.

The day after…we flew home. I was very uneasy and kept at Ronnie until he agreed to get his head X-rayed. We went to the Mayo Clinic, where we’d gone every year for checkups. It turned out that Ronnie had a concussion and a subdural hematoma. He needed to be operated on right away. It all happened so quickly that I think, once again, I was in shock. …

I’ve always had the feeling that the severe blow to his head in 1989 hastened the onset of Ronnie’s Alzheimer’s. The doctors think so, too. In the years leading up to the diagnosis of the disease, in August 1994, he had not shown symptoms of the illness. I didn’t suspect that Ronnie was ill when we went back to the Mayo Clinic that summer for our regular checkup. When the doctors told us they’d found symptoms of Alzheimer’s, I was dumbfounded. Ronnie’s fall from the horse had worried me terribly, of course, and I’d had to urge him to take time out to recover after his operation. But I had seen no signs of anything else.

There’s no telling if President Reagan would have enjoyed more years of retirement, free from the debilitating symptoms of Alzheimer’s. How fragile the brain, with only the skull as protection from the hazards of everyday life…like horse back riding. Spared from the assassin’s bullet, Reagan succumbed to no less a devastating end. As his devoted wife, and true witness to her husband’s last 50 years on earth, Nancy Reagan suffered Alzheimer’s alongside him.

Senator Corker greets former First Lady Nancy ...

Image via Wikipedia

…First of all, there is a feeling of loneliness when you’re in this situation. Not that your friends aren’t supportive of you; they are. But no one can really know what it’s like unless they’ve traveled this path–and there are many right now traveling the same path I am. You know that it’s a progressive disease and that there’s no place to go but down, no light at the end of the tunnel. You get tired and frustrated, because you have no control and you feel helpless. We’ve had an extraordinary life, and I’ve been blessed to have been married for almost fifty years to a man I deeply love–but the other side of the coin is that it makes it harder. There are so many memories that I can no longer share, which makes it very difficult. When it comes right down to it, you’re in it alone. Each day is different, and you get up, put one foot in front of the other, and go–and love; just love.

I try to remember Ronnie telling me so many times that God has a plan for us which we don’t understand now but one day will, or my mother saying that you play the hand that’s dealt you. It’s hard, but even now there are moments Ronnie has given me that I wouldn’t trade for anything. Alzheimer’s is a truly long, long good-bye. But it’s the living out of love.

Photograph of Newlyweds Ronald Reagan and Nanc...

Image by The U.S. National Archives via Flickr

…blest by true love…even in the face of adversity…hugmamma.