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

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

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

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

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

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

A week later, she wrote…

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

What’s next for Pat? 

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

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

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

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

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

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

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

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

…thanks, pat.

………hugmamma.

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living her best life: #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 #47: counting down…

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

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

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

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

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

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

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

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

…love and prayers, pat and brad.

………hugmamma

living her best life #43: a bright spot…

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

Hi everyone,

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

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

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

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

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

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

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

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

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

We’ll see you all soon.

Love you all,
Pat and Brad

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

………hugmamma.

 

 

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.

living her best life…#32: second cycle of treatment

More from Pat as we continue to follow her journey through the everyday challenges of living with…multiple myeloma and amyloidosis.

Received the following last thursday.

Hi [hugmamma]…

It’s now after 1 a.m.. The steroids make it hard to sleep. It’s not like I’m bouncing off the walls. I feel tired, but I just can’t fall asleep. Brad’s snoring doesn’t help. Since Aiden left for college, I can use his bed if I get desperate.

Yesterday was the first day of my second 4-week treatment cycle. Fortunately, it went just fine…like the previous cycle of treatments.

There were a lot of patients again today. I’m getting use to it.

I took the last available seat when my name was called. Sitting next to me was the woman I saw during a previous appointment who was just beginning her treatment. Her daughter was with her again. They both smiled at me. I didn’t recognize them at the time, but now that I think about it…that’s who they were.

Unlike previously, I did not feel guilty about doing better than others. I realized we all cope in our own way.

Those with seemingly lengthy treatments have family popping in now and then to ensure all is well. Some are talking on their cell phones. Some are preoccupied with their IPads or laptops. And some are enjoying their snacks…as if they were at home in their favorite recliner. I had to smile at one guy who was out like a light…”sawing some serious wood.” As for me, I was able to write some overdue thank you notes. Now I just have to remember to mail them tomorrow. [hugmamma here: Pat remembered. Her thank-you note to my husband and me read…

Thank you for the Valentine’s Day gifts.

I really enjoyed the movie MALEFICENT! And Ethan hasn’t found the chocolates yet.

Thank you also for your continued love and support. Those quick text messages are a great comfort. And the emails and blog keep me in the right frame of mine.

I miss you guys and can’t wait until we can visit in person.

Love always…Pat.

[hugmamma here:These words brought tears to my eyes and a lump to my throat. Lucky for me, I married her brother…and gained…a loving…lovely…younger sister.]

I was with three other patients towards a back corner of the room. We were all facing one another and it seemed as though we were in our own separate sitting area. I thought “Wouldn’t it be fun if we were all chatting gaily while having mani-pedis???” Hmmm…I wonder if the Oncology Department has a suggestion box?

Before going in for my treatment, Brad and I went to visit his parents. I think it helped for them to see me looking like my old self. When they offered lunch, I was so hungry I said “YES, PLEASE!!!”

Evidently I’d not had enough, because after my treatment I went to Costco’s food court while Brad was in Home Depot. I felt no guilt as I enjoyed a mocha freeze. I need the calories!

Took my home meds. Much easier with regular pills that dissolve more readily than the gel-coated capsules. Still tastes yucky though!

Over the weekend I had started a food journal as the dietitian I’m seeing had suggested. It made me aware of what I was eating which is something I want to continue. Journaling also ensured I ate…AND made smarter choices. At least I think I did. What I’m not certain about is if I ate enough. I emailed the information to the dietitian, so I’ll see what she says.

Browsed through my cancer-fighting cookbook and made a shopping list. Looking forward to trying the recipes.They sound pretty good and I think my family would enjoy them as well. Most of them contain ingredients which I already have or which I readily recognize. I’m sure I can find what I need at Whole Foods or in the organics/health foods sections of our local grocery stores. I must confess to only recently discovering these aisles. Imagine how shocked my shopping cart was…as it rolled warily through uncharted territory!

Looking forward to the weekend. Have a Reiki session with Mica on Sunday morning. And the State Soccer Tournament is also this weekend. Aiden’s high school team, MPI, is the number one seed for Division II.

That’s it for another “new normal” day. I’m going to try and get some sleep so I’m not dragging tomorrow. I’ve got a lot of healthy shopping to do!

Love you always…[and your family].

…and hugs to all who continue to offer…love and support.

…pat………and hugmamma.

living her best life…#31

A belated HAPPY VALENTINE’S DAY!!! 

Was just reminded I missed sending out hugs to one and all. And yet it’s never too late for…

HUGS…ALL…AROUND!!! February 2011 00053Pat reminded me of my oversight when she emailed the following.

To update you on our Valentine Day’s weekend…

The power surge during the storm killed our TV. So in the afternoon, under sunny skies…you know our Hawaiian weather, bad one minute, glorious the next…we went to Best Buy to get a new one. Stopped by W&M Burger in Kaimuki on the way home. It took me a while but I managed to eat a Royal Burger. Do you remember that place? [Hugmamma here: No, I don’t, but you’re making me “ono” for one…with all the fixins’!]

We watched Maleficent later that night and I loved it! I especially liked the idea that “true love” exists between a child and a parent. I realize Maleficent wasn’t Aurora’s mother…but she acted as though she was because of how she doted on Aurora.

Didn’t do anything special for Valentine’s Day. Just had take out from Zippy’s. Ate something from the fridge instead.

Sunday afternoon friends from our son’s soccer team stopped by with dinner. They visited for a while which was really nice. After they left we heated up the food they brought for us…squash soup…chicken/eggplant stir fry…Chinese style veggies and long rice. All yummy!

That night we packed up a futon and blankets and went to Sandy Beach. 

Sat in the back of Brad’s truck.

I drank hot chocolate; he had coffee.

We looked up at the heavens…and watched the stars.

Lots of shore fishermen were out that night.

After the storm the previous day, Sunday was calm and clear.

On Monday we met Brad’s friends for a picnic and some shore line fishing. 

Brad caught one Oio. That was about it. He gave it to a family fishing a little ways down from where we were.

His friends brought tons of food. The aromas coming from food cooking on the hibachi smelled so good! I made sure to bring something I could eat…including leftover squash soup.

Later when we arrived home…WOW!!!…we found a cooler full of food in our garage. Thanks to Brad’s sister.

Today, Tuesday, I was back at work. Boy! Was my in-tray full!

Didn’t have to cook dinner tonight since we still had a bunch of leftovers.

Checked my blood test results. Everything still looks good. And if I’m reading my numbers right, some of them may have gone up.

Tomorrow is the first day of the second cycle of my chemotherapy treatment.

Oh! And they changed my meds from capsules to tablets which melt more easily in water. No more trying to swallow the gummy, outer coating of the capsules. Yuck! Should be lots quicker to take. Won’t taste better, but at least I won’t be in the bathroom for half-an-hour.

That’s it for now. Until next time…

…love to you, your family…

…and all my well-wishers!

………pat…and hugmamma.

living her best life…#30

We all have moments of reflection. Although most of us never need to contemplate…living with cancer, day in and day out.

Reading Pat’s thoughts on how she deals with her “new normal,” is humbling. I’m less likely to think about what ails me.

Hi [hugmamma],

Haven’t emailed in a while, so I’m glad we got to talk last week.

I realized I’ve been putting off emailing about my last treatment.

For some reason I feel compelled to record something each time…be it good or bad. So I must do this before I forget how I felt last week.

Treatment went as well as the three previous ones.

Had a different nurse, Etta. She was young and pretty like Tara, and just as attentive. 

My appointment was earlier than usual. That seemed to make a big difference. It was crowded! Patients occupied every chair. 

I was struck by the fact that so many people are fighting cancer. It was more than a little disconcerting.

My chair was in a sunny corner of the room.

As in the past, I was in and out while those who were there before me were still being treated when I got up to leave.

I realized that being there for some time, meant some of the patients had to haul their IVs along with them when they visited the bathroom. Some brought snacks or meals. Whether or not they could keep from upchucking their food was another matter.

It seemed to me I was the youngest patient. Or maybe it just felt that way…

More than that I felt rather fortunate not to have suffered any serious side effects. I haven’t lost my hair, or my appetite. Lately, I’ve been feeling a bit more tired and achy, but really…I have NOTHING to complain about.

It’s weird, but I’ve been feeling a bit guilty. Especially when I think about folks I know who had a really difficult time while undergoing cancer treatment. I was warned as to how awful it would be, and what all they had to endure. Truthfully…I have yet to deal with any of that.

I know it’s still relatively early in my treatment process, but I thank God every day.  After all…every day…is another day. And that’s a good thing.

I’ll remember that, should I have a bad day.

Thinking about last week’s treatment leaves me teary-eyed, but it’s something I had to get off my chest…feeling guilty.

So thank you for being my sounding board. I’ve said it before.

It does help.

…love you always…pat.

…love you more…

………hugmamma.