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
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.
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.
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…
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.
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.”
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.
In response toPat’s email in the previous post, close friend Lei, a college counselor, wrote back…
HiPat,
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.
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.
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 wellAunty 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.
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.
Was just reminded I missed sending out hugs to one and all. And yet it’s never too late for…
HUGS…ALL…AROUND!!! Pat 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 aRoyal 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.
I’m certain my female readers can relate when I say…at the moment my “plate” is full to overflowing.
It may not seem that way to look at me, but keeping my mind from becoming unhinged is a daily exercise. At times it’s almost as strenuous as the weight resistance class I’ve begun doing 3 times a week. If I lost a few pounds I know it would lessen the load I have to push off the floor, just as I’m positive once my life is decluttered my mind will return to point balance once more.
Easier said than done…both…losing those last 10 pounds and ridding my brain of its overload. At least for the time being.
Enter…friends!
Just when you need to take the “edge off” the craziness in your life, a few good friends lend a hand…or an ear…or both.
I have three “go-to” girlfriends…Cindy, Mary, and Suzy.
We tend to weave in and out of one another’s lives with very little, if any, fanfare. We never apologize for lapsed time. We just pick up where we left off, even if many months have come and gone since we last got together.
Our friendships are casual. We’ll either email or text synopses of what’s going on at the moment, knowing we’ll expand further over coffee and a bagel, or salad and some pizza.
What I love best about these gals is their love of family, their upbeat attitude, their can-do resolve, and their easy laughter. And with each of them, I feel loved and valued for exactly who I am.
There’s an unspoken acknowledgement with each of these ladies, that we’re good moms, hardworking wives, contributing citizens, and above all, compassionate people.
What’s more we’re not inclined to pass judgment on one another. We don’t offer unsolicited advice. Instead, we compliment one another wholeheartedly and without hesitation.
Good friends not only love one another…they truly like each other.
I like Cindy because she’s extremely humble, speaks thoughtfully, and exudes so little effort when she laughs with abandon.
Mary is a rock. I like that about her. Although the youngest of 7, you’d think she was the eldest the way she manages whatever dilemma befalls her extended family. I’m always amazed at her fortitude and no-nonsense demeanor. She gets things done…and moves on.
My friend Suzy use to be my neighbor before she moved out of the neighborhood. I’d see her mowing her lawn once-in-awhile, but she was up the hill so we never really spoke. And she worked full time, so I’m sure she had better things to do than while away her weekends in idle chatter. When she married a widowed neighbor whom I greatly admired, Suzy and I became fast friends. As retired “snowbirds,” the two go south to California for half the year, but when they’re here she and I fall back in sync so easily. She’s a friend who makes me feel very glad I’m alive.
I make friends easily because I genuinely like people. And I like letting them know how I feel. Most folks respond with grateful hearts. Only a few, like Cindy, Mary, and Suzy, know to cherish what I am offering…
>>:::<< bumps in the road
reveal one’s true friends
exquisite diamonds >>:::<<
I love this photo because of the people in it. This is my hubby and my mother, the two most important people in my life. They are my rocks. Together, they make an even stronger and more solid rock…my rock…a rock tailored for me. Throughout my struggles over the years, they have remained on this journey with me with constant help, support and encouragement. When you encounter “bumps in the road,” you learn who is with you for the long haul…and who is not.
Also, they are both mine! Yes, I am possessive about that. Hubby is MY hubby. I’m an only child, and the only one who calls my mother, “Mom.” From those perspectives, they are both mine.
hugmamma's MIND, BODY and SOUL 