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.

 

 

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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 #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…#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…#36

In response to Pat’s email in the previous postclose friend Lei, a college counselor, wrote back…

Hi Pat,

Am I the worst Catholic ever if I don’t know who Mary Helen is? She sounds like an important nun and I’m embarrassed if I’m the only one who isn’t familiar with her work. I’ll have to google her.

Glad to see your sense of humor is intact. LOL. That’s a good sign.

I gather the poi (a traditional Hawaiian food) I dropped off didn’t do it for you, huh?

Keep your chin up, Pat.

You know I’ve become sort of an expert in this field, and you’re doing a fabulous job!!!

I love you tons and you’re always in my prayers. I’ll call later to get some nourishment into that body of yours.

HUGS AND SQUEEZES…Lei.

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…#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.

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.

 

living her best life…#28

Pat sent the following in an email last Thursday. Life got ahead of me so I didn’t post it. Although a little late, it’s still poignant because of the insight it gives into her frame of mind on any given day.

I’m staying home today and tomorrow. Brad and I decided, if I feel well, I’ll go to work on Mondays and Tuesdays. I’ll do my blood tests on Monday and use that to determine if I should go in or not on Tuesday. I usually receive the results midday Monday.

On Wednesdays, I’ll go in for my treatments. I’ll then rest on Thursdays and Fridays.

I feel well again today, so I thought I might also work on Fridays. However I don’t want to overdo it. So I’ll see what I do.

Yesterday, I actually felt a little tired before and after going in for my treatment. After a nap, I felt slightly foggy…kinda like the meds are the kryptonite to my wannabe super power of clarity. It wasn’t so bad though that I couldn’t make dinner.

Having recently gone to Costco for more ginger juice, I had picked up a few things. So I cooked some steaks on the stove top grill, and made a salad for Brad and Ethan. Of course, I couldn’t eat the steak. Catching a few whiffs of its aroma was all I could do to satisfy my cravings for it. It worked. Mind over matter, I guess.

At least the smell of food, even when I’m cooking, doesn’t “turn my stomach.”

[Hugmamma here: In response to what I wrote…

You’re such a trooper, Pat. Keeping up your positive spirits in trying circumstances.

You inspire me to stop complaining and get on with it. Guess it only goes to show…everything is still normal.

Your life is a new normal now. And I’m here for you without question.

Love you…just as you are. Sending hugs…

………hugmamma.

Pat had this to say by way of reply…

I was thinking the same thing as far as this is just a new normal for me. So with that said, I’m going to take a shower, get dressed, have some breakfast and get started on laundry. Never thought doing laundry would be cause to celebrate, but there you go…

…normal at its best!

…talk again soon…love you always…

………pat.

living her best life…#27

As we all know we can make the hiccups pass with a nice, long, cool drink of water. That usually works.

In Pat’s case it came in the form of a…nephew’s weekend wedding.

Wanted to let you know it was a pretty good weekend.

Although Dennis is still in the hospital [due to his having had a stroke]…he’ll likely be released tomorrow (Monday). …Brad and I stopped to visit on Saturday afternoon before heading to Ramsey’s wedding.

Yes, despite all the trials and tribulations thrown our way, life goes on.

Dennis must be feeling better because he told Brad he’ll probably have a few days off so he’s going  to call him to go fishing. When Brad asked if he could hold a fishing pole, Dennis replied…not yet but he’s working on it.

[Hugmamma here: That’s Dennis! Nothing will keep him from the fish he loves to catch and eat.]

It’s a good sign that Dennis remembers everything. I think he needs to rest to regain his strength.

Having Jen [his daughter, a nurse] hovering over Dennis was reassuring. One of the nurses attending him was a family friend. She comes from a big family just like ours. Because of that, we all went to school with one of the siblings. Malia was a year or two younger than me. An older sister of hers is one of Julie’s [Pat’s sister} closest friends.

After visiting with Dennis, we drove out to the west side of the island for Ramsey’s wedding. 

It was a beautiful ceremony in a gorgeous setting. 

Just the thing I…maybe we all…needed.

It was good to reconnect with everyone. I hadn’t seen most of them since our family meeting where I told them about my diagnosis. So it was nice to be able to talk with them in person, and let them know that I’m doing okay.

Everything was held outdoors. A spectacular sunset was the perfect backdrop.

Of course the Hawaiian food was ono…Hawaiian for “yummy delicious!” There were additional choices, however, since the bride’s family had flown in from Montana.

Uncle Dennis usually makes the poke…a Hawaiian delicacy of raw tuna fish, seaweed, and seasonings. However Cousin Eric and his wife, Nicole, provided it for the wedding.

I actually managed to eat enough kalua [roasted] pig, poi [a Hawaiian starch made from taro root], and sweet potato to fill me up. 

Hawaiian music was playing, while hula girls danced.

Bride Lauren gave her unique, Bird-of-Paradise, floral bouquet away in pieces, which was pretty cool. She gave one piece to her grandmother, the only grandparent who made it to the wedding. Another piece was given to her mother for being so supportive throughout. The remaining two pieces were given to both Ramsey’s mom and step-mom for welcoming Lauren into their families. They were her “moms” since her own lived so far away.

Back to reality…I went shopping at Whole Foods today. Bought some unfamiliar ingredients to make almond muffins. I’ll let you know how they turn out. It’s from a book given to me by a friend. The Cancer Fighting Kitchen has a lot of recipes that look pretty good.

I plan on going in to work tomorrow after my blood test…the start of another week. 

Just taking it one step at a time.

Talk again soon.

…love always, pat.

…and we love you too.

………hugmamma.

 

living her best life…#26

As often happens in our lives, there can be hiccups along the way.

Recently, Pat had such a day…

News in Hawaii is that Kaiser-Hawaii employees are on strike!

My nurse had assured me that she would be here for me this week, and she was. Because Kaiser was short-staffed I had to wait a bit. In spite of that, Tara was as attentive as ever.

Additional blankets were ordered but because of shortages on all the floors, only a few were obtained. 

Brad said the cafeteria was closed.

I don’t know exactly who’s on strike but I guess it includes medical assistants, cafeteria workers, and lab techs/nurses who administer the blood tests…as well as the guys who do the laundry.

Some smaller clinics are closed altogether this week.

Supposedly, the strike should only last a week. However it might continue to occur intermittently thereafter.

 On Monday I had a blood test, and today I went in for chemotherapy treatment. Thankfully, I didn’t encounter any problems because of the strike.

I hope all other patients are getting the care they require. From what I could see while I was there for my treatment, everyone seemed to be receiving what they needed.

When I entered the room,  I sat next to a man who was already undergoing treatment. He was still there when I left.

On the other side of him was a woman who was in for her first treatment. She had family with her. I overheard the nurse explain what would take place, assuring the patient, as I had been, that she would be fine. Then the pharmacist, Richard, arrived to explain what drugs she would receive and how they would be administered. I remember how he’d done that for me on my first day.

Then there was another woman who was in for her last session. She sat and knitted while having her treatment. The nurses thanked her for the manapua…a bun filled with shredded, barbecued pork. A Chinese delicacy she’d brought them on previous occasions. The woman hugged them all when she left, saying she’d return to visit…but not to stay!

That woman inspired me even though it’s still early in my treatment. I wanted to reach out to reassure the woman who was just beginning…or perhaps her daughter.

Maybe one day I’ll be able to strike up a conversation with fellow patients.

Or maybe not.

It’s such a personal, anxious and scary thing for me. I’m sure it must be for the others as well.

While finishing up my treatment, Tara and I were laughing about something. The woman’s daughter…if, in fact, that’s who she was…glanced my way, smiling. I hope my conversation and laughter helped allay her fears…at least a little bit.

I’ll sign off now so I can go and eat something.

By the way…I gained 2 pounds! Yoohoo!!! Never thought I’d be celebrating that.

…we’ll talk again soon…

…love you all…always.

………pat.

 

 

living her best life…#24

Following is my lyrical take on the words Pat wrote me in an email yesterday…

Today was my third chemo treatment. 

Just finished with the home meds.

Nasty, nasty stuff. 

Takes a whole 1/2 hour til I’m done.

Must ask the pharmacist if there’s ANY other way to take them.

Another injection would be better!

When handling the pills, I actually wear gloves.

That might seem like overkill.

Believe me. It’s not.

Because I melt the meds down with water into a slurry which I then drink, the pharmacist warned me about cleaning the area really well with soap and water afterwards, in case of any spills.

I use a designated glass when taking my meds.

The bathroom is where I keep my chemo supplies. 

Apart from these, I’ve cleared most everything else from the counter.

When I’m done, I wash everything down.

I toss out the sponge, gloves, paper towels and anything else I might have used.

REALLY!!!

A shot in the ass would be so much easier.

…how ’bout a magic wand?

………hugmamma.

living her best life…#23

Several days ago, Pat emailed me the following which was indeed heartwarming. I’m sure you’ll agree…

A BEAUTIFUL GAME, FOOTBALL…

That’s what they call soccer. I don’t really know why. Perhaps it’s because football is the universal language of sports, played passionately around the world.

Soccer can be brutal just like other sports. However it can also lessen cultural and religious differences since the referee’s call is pretty much absolute.

The other day my sister Mary text me  to say she’d been talking about me with a co-worker. When Mary mentioned that I had multiple myeloma and amyloidosis, the woman said that her son’s soccer team had just been told about someone with the same diagnosis. Upon hearing this the team decided to dedicate its upcoming game, as well as the rest of its season to that person. Thinking it was just too coincidental, Mary asked the person’s name.

Turns out it was me.

The MPI soccer boys wore white armbands in my honor and won the game 9-0!

I don’t know Mary’s co-worker personally. Her son must have moved up to Varsity after my son Aiden graduated. When I heard what the team did, I was so touched. I didn’t know what to say. 

It’s difficult to put into words how thankful I am for all the people…the different circles of friends who are praying for me and my family, and offering to help in any way they can.

The last two years Aiden was in high school, I had been a team parent. Because of that I came to know a lot of other parents really well. It came with the territory. They helped with fundraising, traveling, potlucks and other events, as well as providing drinks and snacks after every scrimmage and every game. And they ALWAYS came through…BEAUTIFULLY!

Because of the parents…the coaches could coach…and the boys could compete. As a result the team won the Division II State Title last year, and have a REALLY good shot at it again this year!

So long as I’m feeling well, my family and I plan to watch the team compete in the state tournament next month. Before then, we might even be able to attend one of their last games.

I’m truly blessed to know all of them…the players…coaches…and especially, the parents who have become such wonderful friends. They are coming through for me again!!!

And to think it all started because our sons played soccer together…

…a game spilling over into real life…

…beautiful indeed!

………pat…and hugmamma.