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

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

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

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

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

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

A week later, she wrote…

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

What’s next for Pat? 

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

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

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

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

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

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

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

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

…thanks, pat.

………hugmamma.

living her best life:#56…hawaii bound

Yesterday Pat text me some great news …

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

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

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

Can’t wait to go home [!!!!!]

Without a doubt…

…pat’s living her best life…

………hugmamma.

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

I text Pat today…

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

And Pat text me right back…

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

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

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

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

Looking forward to going home!

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

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

…all our love and prayers go with them.

………hugmamma.

living her best life: #54…letting go…

…of her “crowning glory.”

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

Fingers crossed.

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

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

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

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

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

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

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

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

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

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

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

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

………hugmamma.img_4207.jpg

 

 

living her best life: #53…feeling run over

…by a Mac Truck! 

Hi [hugmamma]…

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

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

That about sums it up.

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

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

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

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

I love you.

Pat

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

………hugmamma.

living her best life: #52…in it together

Today I text Pat…

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

And  she text back…

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

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

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

…and especially pat and brad.

………hugmamma.img_4416.jpg

living her best life: #51…a little tough

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

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

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

On 7/18, yesterday, Pat texted. 

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

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

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

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

I love you…Pat.

…and i love you…we all do.

………hugmamma.

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

THIS is the real ME! … I pinky swear…

 

living her best life: #50…more girl talk

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

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

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

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

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

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

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

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

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

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

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

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

[No reply from Pat.]

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

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

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

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

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

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

…and i do.

………hugmamma.IMG_4128

 

living her best life #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…#38

When I think my life’s hit a bump in the road, I know there’s always someone else whose life has hit a pot hole. Some, even sink holes.

Like the young housewife and her infant children who lost husband and father, when he smashed head-on into the back of a city bus while driving to work. Natashia Henderson is a teacher on maternity leave. Her third child is due in June or July. Donations for her husband’s funeral as well as support for the family can be made at http://www.youcaring.com/memorial-fundraiser/in-memory-of-glenn-henderson/331230. 

How my sister-in-law Pat has lived with multiple myeloma and amyloidosis for almost a year is hard for me to fathom. Even my daughter who just went through her own personal hell, can’t imagine how her aunt weathers the constant storm brewing inside her body. How does she do it? Not very easily, I’m sure.

Physically, Pat says she has no complaints. A little fatigue now and then, especially after chemotherapy. Personally…I think Pat complains very little, if ever. 

Pat still has difficulty chewing; her back molars no longer work. In fact, her dentist recommends removing them. The way Pat tells it you’d think it was no big deal. But, of course, it is. It’s just that she’s been living without the ability to chew for a while, ever since her diseases took hold. 

No chewing means resorting to baby food. Well, maybe not Gerber’s, but pretty close. Few adults could live on pablum and love it. I know of none.

Losing a few pounds is one thing. Losing 20-30 pounds when you’re not really trying is scary. At least to those of us who love Pat.

I enjoy making Pat laugh…even when I’m not trying. What I’ve never heard her do…is cry. 

Why shouldn’t she cry, considering what she’s living with? I would. Then again…I cry every time I see An Affair to Remember…starring Cary Grant and Deborah Kerr.

Pat and Brad are making a quick stopover in Seattle this weekend, en route to The Mayo Clinic in Minnesota. I can’t wait to hug her skinny body and make her laugh until her belly aches. I want to catch up on all the little things left unsaid in emails and phone calls. In short, I’d like to mother Pat, allowing her to relax into the loving care and concern of one who’s lived longer. 

I’m not wiser, I’m just more inclined to…

…hug…and never stop hugging.

………hugmamma.

 

 

 

living her best life…#37: wabi sabi

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

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

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

The beauty of imperfection. 

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

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

Beautiful in its imperfection.

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

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

Hi [hugmamma…]

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

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

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

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

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

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

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

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

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

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

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

Love to you and the family,

…and all my supporters…

…pat…and hugmamma.

 

living her best life…#35

Pat updated immediate family and close friends on her condition about a week-and-a-half ago. Following is what she had to say…

It’s been a while so I thought I’d send a quick update. Being that I haven’t sent any in a bit is a good sign. It means everything remains the same.

I’m tolerating the chemotherapy and haven’t had any really bad side effects. It’s mainly been fatigue and feeling somewhat loopy. Don’t know how else to describe it.

Still trying to find the right foods that also taste good and are nutritionally best for optimal health. Thank goodness for the internet…there’s a lot of info out there.

I usually work 3 days a week, unless I have other appointments. This Wednesday will mark the halfway point for my current treatment.

According to my doctor, my labs suggest that I’m “responding to treatment with disease improvement.” His response was to an email I’d sent him about a week ago. I think it means we’re on track insofar as controlling the cancerous cells/protein deposits…in preparation for my transplant. Brad and I will have a chance to ask questions and get more detailed information when we meet with him next week. (No worries. Doc is…wwwaaayyy…more personable than it might seem.)

Other than that, things are as normal as can be…considering.

One trippy note.

Out of the blue, cousin John called last week. I don’t think I’ve ever had a conversation with him in my life! We’d see him during the holidays when I was just a little girl. As a teenager he couldn’t be bothered with me. 

John had me try to guess who was calling. I had no clue. The only person who came to mind was Jimmy (my brother-in-law). LOL! (hugmamma here: I’d say that was a pretty good hunch.) It’s a good thing John didn’t keep me in the dark for too long and indicated that he was family right off the bat. Otherwise I probably would have hung up on him. Julie warned him that might happen.

Anyway, John called to see how I was doing. After the initial shock wore off, it was pretty cool to talk to him…getting philosophical and all. I wasn’t aware that he hasn’t completely recovered from a stroke he had about 2 years ago. John assured me that he and the rest of his siblings, including Sister Mary Helen and her fellow nuns in Rome, are praying for me. How cool is that?

I’ve also heard from Aunty Therese and cousin Marion as well.

Well, I’d better get on with my day. I’m off from work since I had to go to one of those “other appointments.” Loads of laundry to do. Which reminds me…Aiden is home this week for spring break. He’s loving the warm weather and surf at Makapu’u and Sandy Beach.

Chat again soon. Love you all always…

…and all my supporters.

………pat…

………and hugmamma.

living her best life…#34

Been a while since we’ve traveled life’s path…with Pat. We’ve both been busy with other happenings. She spent a lovely week catching up with her eldest son, Aiden, home on spring break. I’m sure it was a little sad for both of them when he returned to college on the mainland. 

My husband and I are in the throes of another remodel. Our last, thankfully. Almost as big a one as when we had our kitchen/dining/living area done nearly a decade ago. So that our late 70’s split level continues to work for us empty-nesters, we decided to turn the downstairs into our master bedroom retreat. Thoughts of cozy nights in front of a gas fireplace and an extra bedroom turned into a walk-in closet conjured up the good life…finally realized. However, as with all great things…there’s a price to pay.

As anyone who’s been through a remodel will tell you “It ain’t easy.” Spending months tripping over stuff stored everywhere but in our bed is no fun. Managing the project is also mind-boggling at times. Not to mention trying to keep us on a diet which means cooking tasty AND healthy…all the time. Of course that’s been haphazard now that we’re totally caught up in moving the renovations along as smoothly and quickly as is coherently possible. There have been glitches here and there, especially in the selection of light fixtures. It’s been my first and only experience with online shopping. If choosing from a myriad of fixtures is this difficult…I can’t imagine how single folks ever decide on dating partners from online images. By far a more important selection than if a flush mount fixture gives off enough light.

Decided to set these mundane things aside…truly unimportant by comparison…for a little while anyway, to remind us of what’s really important. Enjoying life with those we love for as long as we are able. Following is Pat’s unvarnished reflections on just that.

More Birthdays…and then some.

I already told you how my friends and I celebrated our 50th birthdays last year. I have another group of friends with whom I celebrate birthdays.

Our friendships came about because our boys were in kindergarten/elementary school together. Our boys have played sports together, our families have gone skiing together and we’ve been celebrating our birthdays for over 10 years. The boys have gone their own ways, but the moms have remained friends to this day.

These birthday celebrations aren’t fancy and don’t take months of planning. More like “It’s your turn next. What do you want to do?” Today was Maria’s turn. We celebrated at her house with take-out Chinese, wine instead of tea, and a fruit tart with ice cream instead of fortune cookies. (This is Hawaii where anything goes when it comes to food. hugmamma here: Ain’t that the truth!!!)

These are the women I met later in life, who have become lifelong friends. Besides our boys, the ties that bind us are the trials and tribulations both good and bad, that come with age…stress from our kids (a given), infidelity (a bad thing), divorce (mostly a good thing), and serious illness (a new topic).

Sharon was the first of this group that I told about my diagnosis. I knew it was going to be the hardest phone call to make and I waited until the very last moment…the night before my very first chemo treatment. It was hard and I know she was holding back tears. I asked her if she could let everyone else know what was going on. I didn’t think I could make six more phone calls. So she did.

Right away Priscilla offered to help Sharon with the phone calls. Priscilla also promised to keep me laughing and always send funny things she finds on the Internet. Erin, ever the librarian and teacher did some research online and had suggestions on what books to read. Sharon brought me those books, along with a blanket to use during treatment. She also brought food over. The others emailed me words of encouragement, prayers and offers to help in any way.

All except one.

I didn’t know if she was still in Hawaii. We’d heard she might be moving. I know she’s going through a tough time herself, but I don’t really know…none of us do…what’s going on. The last time we were all together, she didn’t want to talk about it and she’s been kinda AWOL ever since. Although she couldn’t make it to Maria’s birthday get-together at least she responded to the emails going around. I thought “great!” maybe things are okay, but still she didn’t email me directly. I wondered why. I wasn’t upset, just a little surprised, but didn’t worry too much about it. I’ve been in the position of not knowing what to do or say to someone and ended up doing nothing at all.

And then today it hit me! WHY AREN’T I REACHING OUT TO HER? OMG! NEWS FLASH! A cancer diagnosis DOES NOT mean the world now revolves around me. Someone…anyone…slap me! Sheesh! I feel like such an idiot. (hugmamma here: Been there…done that! Pretty sure we all have…)

Turns out she’s going through a really rough time. I don’t know what it is, but I don’t need to know either. I do know she doesn’t want to talk about it, but that doesn’t mean we can’t talk about other stuff. I’m not doing nothing this time around.

I finished reading a really good book a couple of weeks ago, and this friend was the first person I thought about. Although she is a published author and knows way more about the world of authors and publishing, I’d always let her know when I came across an awesome read. I don’t know why I hesitated this time…because she didn’t email me first?…or because she’s hiding out? Either way it doesn’t matter. I will email her. I hope she responds, but if she doesn’t that’s okay. At least she’ll know I’m here if she wants to talk books…or anything else.

And FYI, if you like memoirs the book is Maude by Donna Mabry.

…good to remember…that we’re all trying to live our best lives.

…thanks, pat.

………hugmamma.

living her best life…#33

Last week Pat wasn’t feeling so great. Not because of her chemotherapy treatment, but as a result of the side effects of homeopathic supplements prescribed by her naturopath intended to boost her immune system. It’s always trial and error attempting to learn what works and what doesn’t. 

Since then Pat’s had an awesome experience which I’m certain gave her spirit the boost she needed. No doubt about it.

Just won the Division II State Championship Soccer title!!!

Brad and I are not at the stadium. We watched the game on TV. The team won handily, beating Kamehameha Hawaii from the big Island by 7 to 1. 

It was so cool to see all the boys on TV as well as the parents whenever the cameras panned the crowd. What touched me most was hearing the announcers mention that the white arm bands worn by the boys were for “Aunty Pat.” There was also a colorful poster hanging in the stands which read…Get well Aunty Pat…from da Boys. Seeing that brought a lump to my throat.

Not only did we get to watch the game, but we were also provided dinner by one of the soccer families. Lynn and her son Justin had dropped the meal off earlier in the day. This is the fourth week our soccer friends have provided us with prepared food.

I’m still in awe at the level of support we continue to receive.

The team, along with their families and friends, are celebrating tonight’s win with a big potluck just outside the stadium. Another family took candy leis we’d provided to give to the boys from us. They will be up to their eyeballs in leis…literally! They will probably be bursting with pride as each of them has his picture taken with the trophy. 

Finally, the parents can let out a big sigh of relief. The season is nearing an end. All that’s left is the end-of-the-year banquet which is always tons of fun. It’s what we did last year…and previous ones as well. Can you tell we kinda miss it?

Anyway, just wanted to share this moment as it was quite special and meaningful for both Brad and me.

Chat again soon…

…love you always…

…and all my supporters.

………pat…and hugmamma.