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

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

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

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

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

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

A week later, she wrote…

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

What’s next for Pat? 

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

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

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

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

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

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

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

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

…thanks, pat.

………hugmamma.

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living her best life:#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: #48…let’s do this!

That’s what Pat’s been saying for some time now.

“Let’s do this.”

And so she is.

Hi [hugmamma.]  We are doing good.

The first day here was a whole bunch of tests…the worst of it being the bone marrow biopsy. No pain afterwards just a little discomfort. We were at the clinic all day from 7:30 until 4:30 and that was after arriving at the Transplant House at about 2:30 a.m. Needless to say we were both dead tired.

The 2nd day started at 7:30 again and ended at about 5 with visit with an oral surgeon. I get to have teeth pulled! [hugmamma here…Pat’s molars have not been properly aligned for some time now which has impeded her chewing food properly, which has contributed to her rapid weight loss.] Because they are loose and roots exposed, there is a great risk of infection after the transplant so they got to go. I was thinking what else can I get fixed while I’m here? We also got a little tour of the area where they do the stem cell collection and got an education on that whole process and on diet and nutrition after the transplant.

Today was a short day…a meeting with the transplant coordinator and with Dr. Hertz. Everything still looks good and we are moving forward. We have nothing scheduled for the next 5 days (paperwork between Kaiser and Mayo) so we’ll have time to just relax, get used to living in the transplant house and give Brad a crash course on how to turn on a stove! So far so good…Applebee’s is not too far away.

It’d be great if you continued the blog…when you have time. I’m also going to set up a web page where everyone can check on what’s going on. I’ll send you the link before I invite everyone else. 

Living in the house so far has been good. Others here are very helpful…it takes a little getting used to sharing the kitchen space with others. We have to get over feeling like we are guests in some one else’s kitchen. We made our own breakfast for the first time today. Only down side is I can’t just grab a cookie and sit on the couch…no food outside of dining areas…drinks are okay. Brad is doing okay with chores so far because I’m able to help. Gotta get him comfortable in the kitchen…shouldn’t be too hard. Will be heading to Trader Joe’s later today.

Spoke to the boys a few times. They seem to be doing okay. Planning to “face time” with them on Sunday. Maybe I can get them to show me what the house looks like, or maybe I don’t want to know. 

…love and prayers, pat and brad…from all of us.

………hugmamma.

living her best life #46: we can help…

For those of us wishing we could help in Pat’s fight against multiple myeloma…

WE CAN.

Researching treatments for the management of MM, an incurable cancer, means adding longevity to the lives of patients with the disease. Buying time for continuing research means… 

A CURE??? 

Who knows? Stranger things have happened. No harm in dreaming…BIG.

There are a multitude of great causes, many of them deserving. Personally, I like to know where my money is going. I prefer non-generic, causes. Ones that aren’t mainstream. Well known charities tend to corner-the-market when it comes to donor dollars. Nothing wrong with that. Just not where I want to direct my few charitable ones. 

Right now, for me, The Multiple Myeloma Research Foundation is my charity of choice. 

Like anyone with a family member, friend, co-worker, or acquaintance who might benefit directly from a donation, I know that…giving to MMRH is akin to adding longevity to Pat’s life. 

And even if you don’t know her, you do.

Pat’s…your grandmother…your mother…your sister…your wife….your daughter…your aunt…your niece… your cousin. She’s anyone and everyone who means anything to you.

…giving to MMRH is akin to adding longevity to pat’s life…

…and to all those similarly stricken with multiple myeloma.

………hugmamma

Your contribution extends lives.

The Multiple Myeloma Research Foundation is a registered 501(c)(3) non-profit. Your contribution is tax deductible.

  • GIVE ONLINE

    Donate securely online.

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  • GIVE BY MAIL

    Send your contributions to:
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    383 Main Avenue, 5th Floor
    Norwalk, CT 06851

    Checks should be made out to the
    Multiple Myeloma Research Foundation.

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    Call 203.229.0464

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living her best life #44: the facts…

Spoke with Pat while they waited for their flight home from Minnesota. In speaking with her, I got a lot of good information about what’s in store for her when she returns to the Mayo Clinic in a month or so. It prompted me to delve a little further into what had been a total mystery to me. I knew a little bit about multiple myeloma, but not all the scientific mumbo jumbo. I’m pretty sure I’m not alone in saying…I didn’t want to know everything. I was too afraid of what I might find out. Pat’s call gave me the shove I needed to go looking.

The website for The Multiple Myeloma Research Foundation was just what I was looking for to shed some light on Pat’s disease. Of all that I read, the following were of significance to me, as I’m sure it will be to the majority of my sister-in-law’s loved ones, near and far.

Multiple Myeloma is a Treatable Cancer

Multiple myeloma treatment options have increased significantly over the last 10 years. New multiple myeloma treatments have resulted in improved survival rates among myeloma patients. Even more encouraging, there are many promising new therapies under investigation now. We are not just accelerating the development of the next treatment, but by seeking to customize treatments based on our mapping of a patient’s genome, we are accelerating the development of the right treatment for each patient who urgently needs it.

The importance of genomics
One area researchers are working on is better understanding the biology of multiple myeloma. Through genomic studies (studies of the tumor cell DNA), we have learned that there are many DNA alterations in myeloma cells, and these frequently differ from patient to patient. The ultimate goal of genomic research is to develop personalized treatments based on the DNA in the myeloma cells of individual patients. These frequently differ from patient to patient. There is not one set of defining alterations.

Today, we know that certain DNA alterations indicate how aggressive the myeloma is and, in some cases, test results can help guide treatment decisions or determine eligibility for multiple myeloma clinical trials.

DNA alterations and treatment
For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome.

Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

Factors determining treatment
There is no one standard multiple myeloma treatment. A patient’s individual treatment plan is based on a number of things, including:

Age and general health
Results of laboratory and cytogenetic (genomic) tests
Symptoms and disease complications
Prior myeloma treatment
Patient’s lifestyle, goals, views on quality of life, and personal preferences

In addition, many cancer centers have developed their own guidelines for treating myeloma, and these may vary between centers.

Stem Cell Transplants

What are stem cell transplants?

A stem cell transplant, in combination with high dose chemotherapy, is a treatment that offers a chance for durable remission of multiple myeloma. High-dose chemotherapy, though effective in killing myeloma cells, also destroys normal blood-forming cells, called hematopoeitic stem cells, in the bone marrow. Stem cell transplantation replaces these important cells.

Hematopoeitic stem cells are normally found in the bone marrow and in the peripheral blood (blood found in the arteries or veins). Virtually all transplants in myeloma are now obtained from the blood and are referred to as peripheral blood stem cell (PBSC) transplants. Bone marrow transplants are no longer done in multiple myeloma. Stem cells are collected after approximately four cycles of initial (induction) myeloma therapy in order to reduce the amount of myeloma cells. Medications that stimulate the production of stem cells (called mobilizing) are often given to ensure collection of sufficient stem cells for several transplants.

All patients who are eligible for transplantation are encouraged to have stem cells obtained (also known as “harvested”) so that the cells are available if the patient chooses to undergo transplantation at some point during the course of their disease.Stem cell transplants are categorized by the source of stem cells: allogeneic stem cells or autologous stem cells.

Common side effects of high-dose chemotherapy and transplantation include nausea, vomiting, diarrhea, mucositis (inflammation of the lining of the mouth and digestive tract), and fatigue. In addition, because the high-dose chemotherapy attacks healthy, disease-fighting cells as well as cancerous cells, there is an increased risk of infection. Other possible, but infrequent side effects may include organ damage, particularly to the lungs, liver, and kidneys.

…okay then…so now i know.

………hugmamma.

living her best life #43: a bright spot…

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

Hi everyone,

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

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

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

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

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

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

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

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

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

We’ll see you all soon.

Love you all,
Pat and Brad

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

………hugmamma.

 

 

even the rich and famous…

Retired NBC Nightly News Anchor Tom Brokaw has multiple myeloma. He’s written a book, A Lucky Life, Interrupted, due out May 12th.

Brokaw conveyed the following to NBC News senior national producer Tim Uehlinger.

ON MY DIAGNOSIS

I have this very good doctor, Dr. Andrew Majka at Mayo Clinic, who thought something was up.

So he did some blood tests and called me into a meeting with the head of internal medicine, who is also a hematologist, a blood specialist. And they reviewed all the numbers. I didn’t really know what they were talking about.

They turned to me and Dr. Morie Gertz said, “You’ve got a malignancy. It’s called multiple myeloma. And you know people who’ve died from it.”

Geraldine Ferraro, the first woman to run for vice president, died from multiple myeloma. Frank Reynolds, the ABC anchorman, who I had talked to toward the end of his life, not knowing what he had, died from it. Later I found out that Frank McGee, who was the Today Show host, died from it.

 

Odd thing is, I guess I didn’t know enough about it at that time, because my heart didn’t accelerate. I didn’t go into a meltdown of some kind. I was very cool about it.

I was kind of in two parts: I was operating as a journalist human being, and the other part was kind of on the outside looking in saying, “This is a big deal, you’ve got to stay cool.”

I didn’t know what I was in for.

I’m a guy who’s had great good fortune in his life. And everything has kind of gone in my direction. And so I couldn’t imagine that I was going to go through the ordeal that it turned out to be.

ON MY FAMILY

Treating cancer is a family cause. My family is not only attractive — I can say that because I’m paterfamilias — but they’re really smart, and they’re very, very compassionate. They’re all involved in one way or another. My daughter Sarah’s the therapist. My daughter Andrea and her husband, Charles Simon, are very active with social causes. My daughter Jennifer’s a doctor.

 My wife Meredith is Meredith. She’s always been very special, not just to me, but to everybody that she’s ever met. I can say that objectively.

ON GETTING INVOLVED IN YOUR CARE 

One of the things that I learned, and I had really good doctors, as individuals sometimes it wasn’t as collective as I wanted it to be.

So one of the things that you have to learn, even if you don’t have the kind of advantage that I do — with the high profile and the access — you have to learn to manage your case. You have to take an active role in it. You either do it yourself, or you do it in conjunction with another physician, who’s a friend, who’s kind of wise counsel, who’s there off to the side saying, “You know, there may be another way of looking at this,” or there’s “I’m not happy with the protocol that they’ve come up with.”

In my case, I did have very good care. And I was able to put together a kind of team approach. And that worked very well for me.

But not everybody can do that. I’m very aware of that. But everybody has to be constantly conscious of the fact, it’s your body, it’s your health, it’s the cancer that’s affecting you.

 Get involved in the fight.

ON MY WORKING LIFE AT NBC NEWS

I didn’t want them to know.

Everybody has a job to do at NBC News. They’ve been my friends, I didn’t want them to think, “Oh, we gotta worry about Tom.”

I had good care going. I had Meredith and the family. And I didn’t want to become the object of some kind of pity, most of all. I didn’t want to show up on the Internet, “Tom Brokaw has cancer.”

It’s just the way I am.

 But it was very, very touching to know how concerned everybody was. When I got the Presidential Medal of Freedom, I wrote to everyone saying, “This is yours as much as it is mine. Over the years you and everyone else has pulled me across so many lines.”

I was touched by that. But I knew what I had to do, was just to concentrate on getting well.

For more information on multiple myeloma, including how you can help, visit The Multiple Myeloma Research Foundation.

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

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

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

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

………hugmamma.

 

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

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

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

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

Living with Cancer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

………hugmamma.

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

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

A pit stop.

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

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

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

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

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

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

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

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

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

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

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

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

In response, Pat texted…

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

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

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

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

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

…after all…the glass IS half-full.

……..hugmamma.

living her best life…#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.”

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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.