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 #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 #46: we can help…

For those of us wishing we could help in Pat’s fight against multiple myeloma…

WE CAN.

Researching treatments for the management of MM, an incurable cancer, means adding longevity to the lives of patients with the disease. Buying time for continuing research means… 

A CURE??? 

Who knows? Stranger things have happened. No harm in dreaming…BIG.

There are a multitude of great causes, many of them deserving. Personally, I like to know where my money is going. I prefer non-generic, causes. Ones that aren’t mainstream. Well known charities tend to corner-the-market when it comes to donor dollars. Nothing wrong with that. Just not where I want to direct my few charitable ones. 

Right now, for me, The Multiple Myeloma Research Foundation is my charity of choice. 

Like anyone with a family member, friend, co-worker, or acquaintance who might benefit directly from a donation, I know that…giving to MMRH is akin to adding longevity to Pat’s life. 

And even if you don’t know her, you do.

Pat’s…your grandmother…your mother…your sister…your wife….your daughter…your aunt…your niece… your cousin. She’s anyone and everyone who means anything to you.

…giving to MMRH is akin to adding longevity to pat’s life…

…and to all those similarly stricken with multiple myeloma.

………hugmamma

Your contribution extends lives.

The Multiple Myeloma Research Foundation is a registered 501(c)(3) non-profit. Your contribution is tax deductible.

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