a good man…but

I like Bernie Sanders…his affinity for everyman. Sanders’ compassion for the less fortunate is palpable. His ideas to uplift the struggling masses and level the playing field is what America should be about. If everyone thought as Sanders does…peace might be possible.

Sanders, however, cannot be our next president. He proselytizes, speaking to our “better angels.” Abraham Lincoln first spoke to that side of human nature in his First Inaugural Address on March 4, 1861…

“We are not enemies, but friends. We must not be enemies. Though passion may have strained, it must not break our bonds of affection. The mystic chords of memory will swell when again touched, as surely they will be, by the better angels of our nature.”

Almost 155 years to the day, we are where we were then. American turning against American, each side using the Constitution in defense of its own dogmatic, ideological stances.

I give Sanders credit for being the voice of Lincoln when that President’s own party, the Republican Party, has long turned its back on what he stood for…and died for.

Being a senior citizen myself, I can understand Sanders sense of urgency to remake America before he dies. He’s 74. He wants it done…yesterday.

Like President Obama before him, Sanders has started a movement, primarily among young adults. He is calling upon them to help fix our broken society. Sanders expects that they will continue to actively support his presidency, if and when that day materializes. They are to strong arm Congress into enacting all that Sanders envisions in a progressive society.

It may be that Obama wrongfully shouldered the burden of his office alone, as some in the media have accused. However he may have been more realistic than Sanders who expects working class folks to add to their daily overload by actively involving themselves in remaking America. It’s not that it can’t be done, it’s just a question of how realistic an expectation it is.

How will Sanders pay for all the freebies he proposes to give out…free college education for all, rich and poor…and Medicare-like health insurance for all, rich and poor? In addition he wants to expand Medicaid benefits…raise the minimum wage…make it easier for people to join unions…break up the big banks…bring parity to women’s wages…invest in our crumbling infrastructure…and more. Fantastic…rhetoric, to be sure. But who’s going to pay for all of this?

If Sanders’ desire is to fashion our society to look like some in Europe, then we must be prepared to pay the price, as do those citizens. For example, Norway’s total tax burden is 45% of GDP…twice that of the U.S. More than the cost in dollars, however, is the price paid in individual enterprise and hard work.

Yes, I’d like the have-nots to have more, but they should still have the opportunity to work for it.

Hillary Clinton’s plan to help college students is to…allow them to refinance, just as we are allowed to refinance our homes, so that they are not paying excessive interest rates of 10% or more. She is not about forgiving their debt altogether. Furthermore, Clinton offers college students the opportunity to repay their loan as a percentage of wages earned after graduating. 

Bernie Sanders is unrealistically ideological. Hillary Clinton is pragmatic about her ideology.

…I’m for getting something done…

…not for daydreaming about it.

………hugmamma.

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nurturing thursdays: those who serve…

Two news pieces reported on MSNBC today, made me pause to reflect upon the sacrifices made by those who keep the rest of us safe.

The first was about firemen who helped in the aftermath of 9/11. As usual, they did not consider the risks to their own safety and well-being. Only years later did that horrific day return to haunt them, many suffering the effects of cancer. Mounting medical bills in addition to an emotional and physical roller coaster ride puts the victims and their loved ones at high risk for depression and serious loss to their quality of life.

Following that report was a piece about a military family whose husband/father has been deployed to the Middle East multiple times. Of the 19 years they’ve been married, the couple have been separated 9 years. Their two sons, now teenagers, have missed their dad tremendously. While the family understands their sacrifice as a career choice, it doesn’t lessen the impact of losing a member for years on end. Especially knowing that each deployment could mean the death of their loved one.

It’s easy to shed a tear or two for the plight of these folks whose lives are spent protecting us. Having compassion, however, also includes giving back…not “sitting back.”

Rather than pay for “pork belly” projects put forth by representatives in Congress, our tax dollars should be spent accommodating the financial needs of those who risk their lives to save ours.

I think that’s what’s so frustrating about many members of the Republican Party. They want “boots on the ground,” but they ignore the fact that these folks have needs. They’re not wind-up robots. They feel. They break. They bleed. They die…and leave behind loved ones of their own.

President Obama is walking a tightrope between keeping our country safe during these perilous times…and showing compassion for the men and women who must answer the call to lay down their lives for their country. Not an easy decision, although the president’s critics rant and rave that it’s a no-brainer. Scary to think what Obama’s successor would do if he or she is a Republican intent upon spilling blood.

…when did we become a dispassionate people?

………hugmamma.

(Note: For more inspirational writing, visit…
https://beccagivens.wordpress.com/2015/12/17/nurt-thurs-you-are-2/

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.

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: #54…letting go…

…of her “crowning glory.”

As usually occurs when a patient undergoes heavy doses of chemotherapy, Pat lost her thick, beautiful hair today. The upside, if there is any, is that she’s midway through her treatment so she should begin to feel better.

Fingers crossed.

7/22… …Haven’t been eating a whole lot…lost more weight. Have to get calories in some way so most are from liquids. I will eat half a banana or peach, some cereal…but liquids are just easier.

7/23…I’m feeling better today. I might be turning the corner although the antibiotics still knock me out. 

7/24… …As for me, I’m just resting before my evening appointment. It’s typical for me to run a fever in the afternoons so I took some Tylenol. They’ll take blood cultures this evening just to make sure there is no infection.

I’m at the point now where I’m hanging on desperately to what dignity I have left. My hair is starting to fall out in clumps…I’ve got so much hair though that it may take a while. May end up at a salon to just buzz it off…we’ll see.

…I love you too. Thank you for being so supportive.

…We’ve been texting. Aiden’s wondering how I’m doing with Brad’s cooking. Says he’ll cook me something good when I get home.

…weather has been really nice in MN. Today is that magic Day 12 and my counts are headed up! That means I should start feeling better but today I was feverish for most of the day. Tylenol takes a while to kick in and doesn’t really get rid of the fever completely. Wanted to take a drive today but just couldn’t bring myself to go…slept most of the day. Still go in twice a day for antibiotics and anti-nausea meds.

The nurse I had tonight was nice enough to buzz all of my hair off. We had made arrangements in the morning for him to do it in the evening. We weren’t sure if we could go to just any salon being that we have to be careful of any cuts so when we asked John, he said he could do it for me. Apparently he does it for a lot of patients. Not sure if he’s the only one, but the other nurses said “Welcome to John’s House of Beauty”…it’s one haircut he can’t screw up. Feels better but weird. Better because my scalp was kinda sore…I told Brad I think it was the hair desperately trying to hang on…so that pain is gone. Weird in that when I put on the hood of my jacket it feels like my head has a cap with velcro on it. It’s a new look for me…that’s all I can say.

To which I responded…You’re beautiful…inside and out. I love you for the fantastic person you are. You’re like my guardian angel…without hair. Love it. I’d say I’d join you…but I think I’m headed there anyway…thinning hair. Trying to hang onto the few strands I have.

Pat’s been amazing in allowing me to ruminate with her about my daughter’s wedding next year. In spite of her own situation, she offers support for what’s in store for our family as we count down the months, weeks and days until the big event. She and Brad are planning to fly from Hawaii to be with us and has texted…”let me know if you want anything from Hawaii…not that anything Hawaiian would match, but maybe favors with a Hawaiian twist,” and…”We would love to help out in any way we can!”

Imagine! My sister-in-law has cancer…and she’s offering to help me. A sweetheart. That’s all I can say…

…sending pat and brad…armfuls of hugs…from all of us who thinks…she’s pretty great!

………hugmamma.img_4207.jpg

 

 

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 #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.

  • GIVE ONLINE

    Donate securely online.

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    matching donations.

  • GIVE BY MAIL

    Send your contributions to:
    Multiple Myeloma
    Research Foundation

    383 Main Avenue, 5th Floor
    Norwalk, CT 06851

    Checks should be made out to the
    Multiple Myeloma Research Foundation.

  • GIVE BY PHONE

    Call 203.229.0464

Other Ways to Give

living her best life #45: a survivor…

While perusing The Multiple Myeloma Research Foundation’s website, bells and whistles went off in my head when I saw the following.

The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by identical twin sisters Kathy Giusti and Karen Andrews soon after Kathy’s diagnosis of multiple myeloma. Kathy’s need was urgent. She was looking for a cure.

Finding that the current system was not optimized for speed, she changed it.

About Kathy Giusti

kathy-giusti-founder-MMRF

Kathy Giusti, a multiple myeloma patient, is the Founder of and Executive Chairwoman of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She also has more than two decades of experience in the pharmaceutical industry, previously holding senior positions at G.D. Searle and Merck.

Since founding the MMRF in 1998, Giusti has led the Foundation in establishing collaborative research models in the areas of tissue banking, genomics and clinical trials. These models have dramatically accelerated the pace at which lifesaving treatments are brought to patients and improved our understanding of the disease’s biological underpinnings. Today Giusti is widely recognized as a champion of open-access data sharing and a strong advocate for patient engagement, not only in their cancer care, but as part of the research and drug development process.

Giusti’s visionary leadership has earned her a number of prestigious awards and recognitions. Most recently, she was ranked #19 on Fortune Magazine’s Worlds’ 50 Greatest Leaders. In 2013, she was named an Open Science Champion of Change by the White House. In 2011, she was named to the TIME 100 List of the world’s most influential people. She has also received the American Association for Cancer Research Centennial Medal for Distinguished Public Service, the Harvard Business School Alumni Achievement Award, and the Healthcare Businesswomen’s Association’s Woman of the Year Award.

Giusti has been featured on the Today Show, NBC Nightly News, CBS Evening News, Fox News, CNN, and Bloomberg. Her efforts have also been profiled by The Wall Street Journal, The New Yorker, Harvard Business Review, The New York Times, Forbes, WIRED, and Fast Company.

Giusti currently serves on the President’s Council of Advisors on Science and Technology, the Executive Management Committee of Stand Up to Cancer, and the Harvard Business School Healthcare Advisory Board. She has previously served on several other boards, including the National Cancer Advisory Board, the Institute of Medicine’s National Cancer Policy Board, and the Board of Directors for IMS Health.

Giusti received her MBA in general management from Harvard Business School and graduated from the University of Vermont magna cum laude with a Bachelor of Science in Biological Sciences. She holds an honorary Doctorate from the University of Vermont.

…miracles do happen...through the power of positive action…

…and prayer.

………hugmamma.

living her best life #44: the facts…

Spoke with Pat while they waited for their flight home from Minnesota. In speaking with her, I got a lot of good information about what’s in store for her when she returns to the Mayo Clinic in a month or so. It prompted me to delve a little further into what had been a total mystery to me. I knew a little bit about multiple myeloma, but not all the scientific mumbo jumbo. I’m pretty sure I’m not alone in saying…I didn’t want to know everything. I was too afraid of what I might find out. Pat’s call gave me the shove I needed to go looking.

The website for The Multiple Myeloma Research Foundation was just what I was looking for to shed some light on Pat’s disease. Of all that I read, the following were of significance to me, as I’m sure it will be to the majority of my sister-in-law’s loved ones, near and far.

Multiple Myeloma is a Treatable Cancer

Multiple myeloma treatment options have increased significantly over the last 10 years. New multiple myeloma treatments have resulted in improved survival rates among myeloma patients. Even more encouraging, there are many promising new therapies under investigation now. We are not just accelerating the development of the next treatment, but by seeking to customize treatments based on our mapping of a patient’s genome, we are accelerating the development of the right treatment for each patient who urgently needs it.

The importance of genomics
One area researchers are working on is better understanding the biology of multiple myeloma. Through genomic studies (studies of the tumor cell DNA), we have learned that there are many DNA alterations in myeloma cells, and these frequently differ from patient to patient. The ultimate goal of genomic research is to develop personalized treatments based on the DNA in the myeloma cells of individual patients. These frequently differ from patient to patient. There is not one set of defining alterations.

Today, we know that certain DNA alterations indicate how aggressive the myeloma is and, in some cases, test results can help guide treatment decisions or determine eligibility for multiple myeloma clinical trials.

DNA alterations and treatment
For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome.

Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

Factors determining treatment
There is no one standard multiple myeloma treatment. A patient’s individual treatment plan is based on a number of things, including:

Age and general health
Results of laboratory and cytogenetic (genomic) tests
Symptoms and disease complications
Prior myeloma treatment
Patient’s lifestyle, goals, views on quality of life, and personal preferences

In addition, many cancer centers have developed their own guidelines for treating myeloma, and these may vary between centers.

Stem Cell Transplants

What are stem cell transplants?

A stem cell transplant, in combination with high dose chemotherapy, is a treatment that offers a chance for durable remission of multiple myeloma. High-dose chemotherapy, though effective in killing myeloma cells, also destroys normal blood-forming cells, called hematopoeitic stem cells, in the bone marrow. Stem cell transplantation replaces these important cells.

Hematopoeitic stem cells are normally found in the bone marrow and in the peripheral blood (blood found in the arteries or veins). Virtually all transplants in myeloma are now obtained from the blood and are referred to as peripheral blood stem cell (PBSC) transplants. Bone marrow transplants are no longer done in multiple myeloma. Stem cells are collected after approximately four cycles of initial (induction) myeloma therapy in order to reduce the amount of myeloma cells. Medications that stimulate the production of stem cells (called mobilizing) are often given to ensure collection of sufficient stem cells for several transplants.

All patients who are eligible for transplantation are encouraged to have stem cells obtained (also known as “harvested”) so that the cells are available if the patient chooses to undergo transplantation at some point during the course of their disease.Stem cell transplants are categorized by the source of stem cells: allogeneic stem cells or autologous stem cells.

Common side effects of high-dose chemotherapy and transplantation include nausea, vomiting, diarrhea, mucositis (inflammation of the lining of the mouth and digestive tract), and fatigue. In addition, because the high-dose chemotherapy attacks healthy, disease-fighting cells as well as cancerous cells, there is an increased risk of infection. Other possible, but infrequent side effects may include organ damage, particularly to the lungs, liver, and kidneys.

…okay then…so now i know.

………hugmamma.