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

facing our demons…

When I was a child growing up in Wailuku on the sleepy island of Maui, I sometimes wished I could attend Sunday service at the Jehovah Witnesses Hall near my family’s rented house. Walking past the Hall on my way to buy a few things at the grocery store, I could hear the members singing. Unlike the solemnity of my own Catholic church, the Jehovah Witnesses sounded like they were having a blast. What I wouldn’t have given to sing my heart out just like those folks. 

While I never thought twice about what the Jehovah witnesses looked like, I assumed they were blacks. Why? Because of pictures I’d seen on TV and in print of blacks smiling and clapping their hands as they sang their prayers to God. I wanted to be like them. Still do.

I believe in a joyful God, one who focuses upon goodness. One who overlooks our flaws, knowing we will improve…if we want to improve. 

This morning as I watched CNN news, I wished I was sitting among the parishioners of the church where 9 blacks had been gunned down. 

If you’re asking “Why?” The simple answer is “Because instead of hatred for the racist killer, those present inside and outside the church were filled with love for the victims.” As one commentator put it…the dead are now in heaven with God…having died in the church they loved. 

Unlike the media, the church goers were focused solely upon their loved ones.

According to that same commentator, we cannot deny the killer’s ideology of racial hatred. In fact, we should not. We need to face it head on, armed with the ideology of love.

The fact is…evil exists…as does good. The battle will continue as long as mankind does.

If we can learn from the congregation of Charleston’s Emanuel AME, to honor one another with love…

…good will always conquer evil.

………hugmamma.

prejudice thrives…

Sad, but true.

The Civil War which took the lives of thousands of young men, freed colored people from the binds that tied them to their white owners. What the war did not do was erase prejudice from the hearts of whites who held fast to discrimination, and passed it down through their families, generation after generation after generation.

Racial hatred.

Inevitable?

Perhaps the color of a person’s skin signifies the precipice separating one from another because of religion, ethnicity, culture, place of birth.

Perhaps the color of a person’s skin signifies a divide too vast to bridge. 

Perhaps the color of a person’s skin elevates one above the other.

Perhaps the color of a person’s skin is the difference between…heaven and hell.

Perception. Man made. Can be altered. 

…or can it?

………hugmamma.

 

after decades…relinquishing control…

We wives and moms metamorphose all our lives.Butterfly-Header

Sometimes we’re butterflies. Wowee!!! Look at me flutter…

MothsO18Most times, however…we’re just plain, ole moths. Hardworking, for sure. No time to flit around looking beautiful all day long. We save that for special occasions, which get fewer and farther along once the children start coming.

I can’t remember when I last felt like a butterfly. Come to think of it, I can’t remember what it was like to be twenty-something. Those days of short-shorts and string bikinis are all but forgotten. And yes! I did wear both. You’ll barf if you’re trying to imagine it, given what I look like now. So don’t try!

Over the last 29 years I’ve worn my moth-eaten wife and mother’s gray garb with happy determination. When I was younger I could do it all. At least I thought I could.

Multi-tasking was a given. Getting hubby off to work after a nourishing breakfast…seeing my daughter onto the bus headed for school…household chores…grocery shopping and other errands…yard work…classroom volunteering…chauffeuring my budding ballerina to dance classes…meals to make…laundry to do…bedtime stories with which to settle in.

Thank goodness hubby loved to play so he and our daughter could do their thing every chance they could. I never got over my childhood habit of…work before play. With 7 sisters to do most of the work around their house, my husband and his 4 brothers were “boys of leisure.” From what I saw when we were dating, they didn’t even make their beds…at least not my husband.

That’s not to minimize playtime, however. I was extremely glad my hubby liked playing with our daughter. Otherwise, that would’ve been one more thing on my “to do list.” And if that were the case, I’m sure it wouldn’t have felt like fun to my toddler if I clocked how much time I had to sit around playing games.

I even explained to the school counselor during kindergarten orientation how I would prefer my child have a teacher more akin to my husband than me. Would you believe I even teared up about it? I was adamant about not wanting someone geared toward the three R’s…reading, ‘riting, ‘rithmetic….and nothing else. My daughter would get enough of that kind of discipline at home…from me.

So over the years as a stay-at-home mom, I assumed control over an empire…my empire. Even when the “king” returned home to his “castle,” I was still in charge…on the quiet, of course. I feigned homage to my lord and liege.

We moms know who manipulates the strings behind this real life puppet show. Don’t we ladies?

For 45 years, even after we became empty-nesters…almost 11 years now, I ruled the roost. Although as this monarch aged the job was no longer a cinch. Not that it ever was. It’s just that I’m not as adept at  keeping all the balls in the air anymore. It’s more like I’m rolling the balls along a gravely path. And it’s getting gravelier every year. Trust me. One of these days it’s going to seem as though I’m rolling those balls straight uphill.

The last several years I rationalized my loss of get-up-and-go to doing quality work. Doing one or two tasks a day was just fine. At least that’s what I told myself. Meanwhile dust collected. I could no longer see my reflection in the wood floors. Not that I ever could. But they were better than they are now, that’s for sure. A few more days went by before I did the laundry. I bought more underwear to tide us over.

I could chalk it up to my having an under-active thyroid, which I learned about during a visit to a naturopath. Thankfully, that’s been resolved.

Working thyroid or not, getting old slowed me down. I can’t do half of what I use to do, more like a third, on my best days. And I sure as heck can’t move between the house and the yard without breaking a sweat. Don’t get me wrong, it was never a breeze. Just more doable. These days the weeds live in harmony with the flowers. That way, the jack rabbits…yeah, they’re no longer cute, little bunnies…can graze on something other than my prized plants, lovingly hand-picked and bought with hard-earned dinero.

So what’s my point?

Yesterday I decided to skip out on an appointment with the designer who was stopping by to discuss window coverings for our newly remodeled, downstairs master bedroom suite. After almost 3 months as project manager and all that entails…on top of my normal routine…on top of nursing our beloved dog who eventually passed, and a loving cat who almost died from some mystery ailment…and on top of 3 weeks in Nashville literally helping my daughter get back on her feet after back-to-back surgeries…my vintage locomotive of a body finally went kaput! My brain gave in and decided we should all take a mini vacation. So I did. I drove to Home Goods, a subsidiary of the retailer Marshalls, and left my house in the very capable hands of my recently semi-retired husband.

Going over what we’d decided to install on the windows, I opted out deciding I’d live with whatever technicalities the designer and my other half finalized. It felt really, really good to relinquish control. My husband could grill the designer on her credentials as far as the installation went. After all she doesn’t work for the manufacturer, so her information is second-hand. More than that, she had to prove to my husband that what she was selling was worth every penny of his money. She knew my aesthetics; she’d never dealt with his budgetary consciousness…first hand. I did. Convincing him to spend the money was a job in itself. Of course, I knew the right buttons to press. Like “It’ll only increase the resale value of our house.” That’s always a good one. Fastest way to get him to open up his checkbook. Not that he’s ever “fast on the draw,” just not “slow like molasses.”

butterfly-garden-4For a couple of hours I felt as though I was floating along on a cloud…free as a…butterfly. No worries. No cares other than looking at what was in front of me…a wall rack for the laundry room doubling as a gift-wrapping station…decorative waste baskets…a piece of art for the bedroom. When hubby joined me later I showed him what I had in my shopping cart. He pointed out things I’d not thought about which made me change my mind, returning some of the items to their shelves. Made me feel good too, having someone else make decisions, however small.

I felt so calm and refreshed that hubby and I wound up having a date night. We walked to nearby AJE restaurant, dining on Japanese food, a favorite of ours. Not having been to the movies in a while, we decided to stop at a nearby Regal Theatre to see The Avengers Age of Ultron. We both dozed off, unbeknownst to one another, near the beginning of the film. Hubby said he awoke and saw me asleep. We didn’t miss much, however, since most action films are primarily about the actors annihilating one another, or trying to at least. It was good not having to think about anything…except the good guys smashing the bad guys to smithereens.

Today I was back on the job. MothsO125As project manager I oversaw last minute details…where to hang mirrors, artwork, vintage pieces and chandeliers.

I never know how purchased items are going to look once in place. I have some idea, based upon pictures and customer reviews. However it isn’t until I see a piece in place will I know if it works as I imagined, or not. Take the massive metal chandelier I bought online to hang over the end of our king-sized bed. I thought it would hang 24″ low. Not until the electrician was up on a ladder, fixture in hand, did I learn that my gorgeous chandelier would block most of our view of the newly minted porcelain tile fireplace with gas insert, as we lay in bed. It was me and my woman’s intuition going up against the practical mindset of 3 men, including my husband and our contractor.

I’m delighted to admit…the men won! What got me over to their side? The electrician saying “If the chandelier isn’t hung as a flush mount, then the only other option is that it hangs 34″ from the ceiling. In that case, what you’ll be looking at while sitting in bed is the light glaring out at you from the chandelier.” That made total sense, so I relinquished control of that debate.

I think I’m going to like having the men in my life take back control…

…as long as i agree. 

………hugmamma. butterfly-world

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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    Send your contributions to:
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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.

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 #42: an outpouring of love

When I offered to chronicle her life as a cancer patient, I did so wanting to give Pat an outlet to vent, to get her feelings onto “paper” and out of her head. Blogging these last 5 years has been cathartic for me; I thought it might be the same for my sister-in-law. Writing her story was also a way for me to do something more tangible than just praying.

Don’t get me wrong. Prayer is powerful. I just wanted to do something more, and writing was right up my alley.

Pat’s reason for doing this journal was two-fold. She wanted to provide readers with insight into how individuals with cancer live from day to day. Her desire was to help other cancer patients and their caregivers. She wanted them to know…they were not alone.

Equally important to Pat, was to have her journey with cancer chronicled so that she could remember the good moments and the not-so-good ones. She wanted to look back and thumb her nose at the Big C, once she’d beaten it into remission.

It goes without saying that the loving support of family, friends, even strangers, is hugely important to Pat. She’d be the first to say…her strength to endure has come from her community of caregivers. I couldn’t agree more.

In response to an email sent to update those closest to her about her first day at The Mayo Clinic, Pat received the following outpouring of well wishes.

Steph…I’m glad everything is working out…hope you win plenty at the casino!…safe trip home…sending you prayers and warm hugs!
Lei…You’re numbers may be unremarkable, but you my friend are remarkable!…you know I’d be taking you to the Mall of America…nothing beats chemotherapy like retail therapy!…tell Brad to keep you happy, “happy wife…”…love you tons and big nalo hugs!
Richard…Your positive outlook and sense of humor in the face of adversity are such an inspiration…our prayers and positive thoughts are with you and the boys…love you all!!
Bozo…Pat and Brad, just wanted to add the newest member to our family, Lauren, sends her love too…let us know if u need anything…love u.
Mary L….Pat and Brad, you and the boys are always in our thoughts and prayers…we love you!

And then there was the buzz of caring concern and love via text messages to one another…

Wow thank you! I emailed her too and was waiting for a response. Great news! … Thank you Jen for the update. Aunty Pat sounds upbeat…have good feelings. … Thanks Jen. I’m happy to hear the consultation was good! I was praying so hard for her today. Even though this i a type of aggressive cancer – I’m begging God to heal our sister and Aunty. He tells us to pray interceding for others. Join me in prayer and intercede in Pats behalf for God to perform a miracle in her body!! Love you all!! … Thank you Jen. To all – let’s keep one another updated with whatever info we hear. I know we are all concerned for Pat, and hope for the best for her and her family. Love to all. Lil. … Thank you Jen and to all the family for the continued prayers. Miracles happen through the power of prayer! Love you all. Louise. … Thanks, Jen. Also texted aunt Pat to see how she’s doing. So many responses to her email. Everyone is pulling for her. Love, Kathi.

It takes a village sending an abundance of healing sentiments to ensure that Pat’s in a good place. 

…and she’s deserving of all the love being showered upon her.

………hugmamma.

living her best life #41…what’s up doc?

In response to a text sent her earlier today from nurse niece Jen, Pat texted back…

Thanks Jen. I only got bits and pieces of your text, but I got the gist of it. Was trying to send an email to update everyone but couldn’t. Was anxious about coming to MN, but now that we’re here, everything is good. Mayo Clinic is pretty amazing and impressive. Was there from 8 a.m. to almost 5 p.m.! After consulting with doc, did more tests…nothing invasive, just blood & urine. Doc here and at home are encouraged by my numbers and think I’m a good candidate for transplant. Follow up appt tomorrow. Also met with a social worker to go over psycho part of this whole ordeal. He and a nurse went into more detail about what actually happens during transplant. I’ll try to get an email out…in the meantime can you let everyone know we’re doing okay? Thanks again for checking in. Love you.

…hugs, jen…for updating pat’s network of supporters…

………hugmamma.

 

living her best life #40:…biting the bullet.

Back on April 8th, Pat emailed me the following.

Life happened and I didn’t get around to posting what she wrote. And then came my daughter’s emergency and…all hell done broke loose!!!…as Louise Jefferson use to exclaim on that long-ago sitcom, The Jeffersons.

After seeing Pat this weekend and being reminded in the flesh of her ordeal, I felt compelled to share her voice…

Living with Cancer

I’ve been living with cancer now for 4 months. It’s probably been closer to a year, but the diagnosis came in January. Started chemotherapy on January 21, 2015.

Every time I send updates to my family and friends I tell them I’m doing fine. I’m tolerating the chemo well. I haven’t had any really bad side effects like nausea or vomiting and I still have all my hair albeit a lot more gray now. And that is the truth.

But it still SUCKS big time. The last time we spoke you asked how I can keep such an upbeat positive attitude (I was talking to you at the time – ‘nuf’ said.) Actually, it’s not so hard when I don’t feel sick even though I know that I am. That, and the unwaivering, unbelievable support we have gotten from day one from family and friends both here and far across the globe…

BUT…today was my 12th chemo treatment…4 more to go. Took my home meds a few hours ago. Brad saw me drinking that nasty concoction down and came into the bathroom to offer support. I told him I can’t wait for this all to be over. I DO NOT look forward to drinking that stuff on treatment days. I’m also getting a little tired of getting poked every week…blood tests on Mondays, Wednesdays it’s an IV in my hand and a chemo shot in my belly (it doesn’t last long, but it burns going in.) Every 3 weeks or so, I see the Naturopath for acupuncture. I don’t look forward to that much any more either. Don’t get me wrong! I still love Dr. Burke, the scenic drives to Waimanalo, and talking story with him. Still. I’d really like to dump all the homeopathic meds down the sink too.

But I won’t because I’m living with cancer, not dying from it. Not today, anyway. And I’ll do whatever it takes to make sure that doesn’t happen for a long time.

My take on this: I have cancer. I don’t have time for this. What do I need to do, Doc? Let’s just do it and move on.

So I will get through the next 4 months. Whatever that might entail. Bring it!

I’m guessing for most cancer patients like me, it’s always in the back of one’s mind. Not 24/7. I don’t obsess about my condition (at least I don’t think I do), but it’s always there. Every quiet moment, any down time, it pops into my head. “Oh yeah. I have this thing called cancer. But wait, I have to do the laundry now.” Sometimes it’s still unbelievable; it’s not denial, it’s just unreal. 

So, yeah. Yesterday (it’s now 2 a.m.) was treatment day 12, so I can’t sleep. I’m angry and I need to vent, but I’ll be fine tomorrow, or later today.

OK. Pity party is over. No time for that either.

BTW…did some online retail therapy. That always helps. I do have an excuse though. I lost a couple more pounds and I only have 2 pairs of skinny jeans, and 0 shorts that fit. The jeans aren’t so skinny-fitting anymore. (One day I used a bungee cord as a belt…only around the house, of course…I didn’t go out like that.) Thought I might start a new fashion trend though. Actually, I was surprised I had lost more weight. Especially after our Easter brunch. Thought for sure I’d gained something back.

When we spoke this weekend, Pat told me about her last doctor’s visit. 

Pat likes her doctor. An Indian man steeped in the nurturing ways of an eastern culture, he has been her rock from the beginning. When he asked how she was feeling, there was a long pause before she could bring herself to answer. And he let her have that moment to collect her thoughts. 

Finally, Pat told the doctor that she realized she had undergone the “easy” part of her treatment. That the next lap would be difficult. I think she also told him a little of how she’s been feeling lately. Her doctor’s reply was one of knowing relief. He’d been wondering why she wasn’t having these feelings earlier in her treatment.

Sounds like the doc was waiting for Pat to “explode.” Otherwise she might have imploded. And that can’t be good for her fight against cancer.

Pat told me she’d recently read about her stem-cell transplant. The one she’ll have at The Mayo Clinic. Reading about it clearly brought her face to face with the hard reality of what lies ahead. Apart from the transplant itself, she has to remain in Minnesota for 3 months. During the first month Pat will be in isolation. According to the CDC…

During the first month after HSCT, the major host-defense deficits include impaired phagocytosis and damaged mucocutaneous barriers. Additionally, indwelling intravenous catheters are frequently placed and left in situ for weeks to administer parenteral medications, blood products, and nutritional supplements. These catheters serve as another portal of entry for opportunistic pathogens from organisms colonizing the skin (e.g., . coagulase-negativeStaphylococci, Staphylococcus aureus, Candida species, and Enterococci) (32,33)..

Wish I could be a butterly on the wall, sending positive vibes towards Pat during her forthcoming isolation. 

It’s hard to fathom how Pat will endure these next several months. And yet she will. She’s a fighter…of the soccer mom, Hawaiian variety type.

Pat and Brad are in the Indy 500 of their lives, and they’re determined to win the race. With our unwavering good thoughts and abundance of prayers, they’ll make it over the finish line. 

…and for sure we’ll be cheering them on…every lap of the way!!!”

………hugmamma.

living her best life #39:…pit stops along the way

That’s what the weekend was for Pat…and Brad, her husband.

A pit stop.

An evening with my husband and me was just one of many pit stops along the race car track that is now Pat, and Brad’s, life. On their way to The Mayo Clinic in Minnesota, they paid us a brief visit…to recharge and refuel…for the road ahead. It’s sure to have many challenges, both known and unknown.

 As we made our way to where we would meet Pat and Brad in the baggage claim area at SeaTac Airport, I hurriedly scrambled for a piece of cardboard I’d stashed in my purse. It was the backing for a Mother’s Day card my husband had bought for his sister. While walking along, I managed to write their last name on the cardboard with a pen. Thank goodness there were only 4 letters. I filled them in with squiggly lines trying to make the name more visible. Beneath it I drew short, squat arrows, filling them in as well. 

I kept a lookout for them at the top of the escalator. Hubby meanwhile wandered off to check on something. Spying Pat and Brad at the foot of the escalator I quickly called for my husband to “Hurry up! They’re here!” Holding the sign above our heads, we pretended to be their limousine service come to pick them up.

Walking towards one another we all laughed at my crazy antic. There were warm hugs all around as we exchanged our hellos. Moving toward the luggage carousel, the guys ahead of us, I motioned for Pat to join me in sitting down on nearby chairs. I did so because she seemed on the verge of tears. 

Pat revealed she’d been frustrated and angry the last couple of weeks. As she said later when we again had a few moments to ourselves…Pat realizes “I am fighting for my life!” And she is. The prognosis for multiple myeloma is 7 years. I was reminded of that in a recent TV piece about Tom Brokaw, a former news anchor. He too is battling MM. 

Something else Pat said which resonated with me. After spending time with family and friends, she said “They get to go back to their own lives. I’ll never go back to my life as it had been.”

It’s true. Pat’s new life is still unfolding.

The most important people in my sister-in-law’s life now are the doctors and other health care providers who are working to save her life. They are her lifeline. Literally.

Unlike my husband, I am a fatalist. Beneath my positive veneer lies an acceptance that life is finite. I can only credit it to being raised by a single parent, a mom whose love seemed conditioned on how she was feeling. If things were fine with her, she was fine with me. If not, her love could be taken away. Nonetheless, she was all I had so I made the best of it. A survival mechanism that has served me well. As well as can be, despite some obvious drawbacks…like trust issues.

In a text message sent off to Pat this morning, I wrote…

Thinking of you. And you’re wrong. I haven’t been able to go back to my life. Physically, yes. Mentally…you’re always…and I mean always in my thoughts. Keep wondering what you’re doing…how you’re feeling…what you’re thinking. Same way I was with my daughter. If I lived in Hawaii, I’d probably make a nuisance of myself. Hope you can come and spend a few days before you go back to Minnesota for the transplant. Let me know how it’s going…

Earlier I’d texted…”Call me if you need to unload or just need a boost. Think of me as your booster shot.”

In response, Pat texted…

Can’t thank you enough for last night. It was just the boost that I needed to be able to face this coming week. I feel like this is just the beginning which is hard to fathom after 16 weeks of chemo. 

We appreciate everything you’ve done so far and your unwavering support and love. I look forward to seeing you and my brother again and I can’t wait to see your remodel. And yes…I can pull weeds! (In my text I had said she could help me pull weeds when she came again. And I’d pay her!)

A little levity is just the “spoonful of sugar to help the medicine go down…the medicine go down” as touted by everyone’s favorite English nanny, Mary Poppins.

When you think about it…we’re all dying. A few know when and how; most have no clue. The lesson for all of us?

…live our best lives…right here, right now…

…after all…the glass IS half-full.

……..hugmamma.