Gone But Not Forgotten

So many people I know are grieving the loss of loved ones. Some are recently gone, but others have been gone longer than we care to acknowledge.

In fact, today is the 25th anniversary of Ray’s passing.

Twenty-five years.

It feels like yesterday and like a lifetime away at the same time.

For those of you who don’t know, Ray Noll was my first husband. He was diagnosed with Acute Lymphoblastic Leukemia (with PH positive chromosome, an important fact that let us know at diagnosis that it was unlikely he would survive this illness.) He was diagnosed in July 1996 after experiencing shortness of breath, night sweats, and other unusual symptoms. As a second degree black belt, Ray was very physically fit and the onset of these symptoms was pretty sudden and concerning.

After his diagnosis, he was randomized for a trial of chemotherapy, which was the treatment method he wanted. The other option was a bone marrow transplant, but we would have had to travel to Fred Hutchins Cancer Center in Seattle, and Ray did not want to die so far from his parents. Plus, finding a match would have delayed treatment.

After aggressive treatments (“red devil”, anyone?), losing his long curly locks, and gaining weight from steroids, Ray achieved remission in 1997. Losing his hair and gaining weight were both devastating to him, but he was glad to be alive. We were in the process of building a house during 1997 and that was a wonderful distraction for him. We moved into our new house in September of 1997, and Ray was so excited to finally own his own house. Alas, the joy was short-lived.

He woke up one day in April 1998 and said, “it’s back”. And sure enough, it was. We traveled to University Hospitals of Cleveland Cancer Center for several months of treatment. The goal was to achieve remission a second time so he could have an experimental cord blood transplant. While these transplants were successful on children, it was still an experimental treatment for adults. Only about 30 had been done to that point. Unfortunately, remission was not to be achieved and we returned home (in the middle of the night after Ray made a sudden decision to “leave now”… a story for another day). He continued his treatment under the brilliant Martin Hyzinski, overcame meningitis, paralysis, loss of speech, and a variety of other challenges. He passed away on the morning of February 6, 1999, after contracting pneumonia. His weakened body could no longer fight the infection, and the cancer had taken over due to the cessation of treatment while battling the meningitis.

I think it’s really important to remember those we have lost, and reflect on all the lessons they taught us. Ray wanted nothing more for me than to “be happy” and “to finally have a baby”. I did both, and I know that makes him happy.

He was a joyous person, full of life and energy. It was a testament to him the number of people who surrounded his death bed for 3 days, 24/7. His childhood friends, band mates, karate buddies, family and friends all came to be with him, and hundreds of people attended his viewing and funeral. I strive to be that kind of friend; we all should.

His musical prowess started in his early years when his mother made him play the accordion, which he promptly disassembled, used a hair dryer to blow through the bellows, and played like a piano. Having never taken a musical lesson in his life, he was one of those innate talents who could just play anything. Piano, drums, guitar. He even taught himself to play the mandolin. “Maggie May” after two days of owning the mandolin was quite impressive. I like to think that my son is channeling Ray’s musical talents!

The whole process of watching someone so young and vibrant fight to stay alive changed me to the core. I was only 36 when Ray died, but it was a lifetime of lessons in those 2 1/2 years. That life isn’t always fair, and it can turn on a dime. That bad things happen to good people. That life is precious. How to be a caretaker and to not take for granted your own health. How to be grateful for all days, good and bad. How to be an advocate, fighting doctors and insurance companies, alike. How to ask for help and graciously accept it. How to grieve and yet move forward, to honor them through both processes. How to pay all that love and support forward.

Remember your loved ones. Reflect on their lessons and your time together. Keep their memories alive but don’t be afraid to live your life. They would want you to be happy.

To all those remembering Ray today, thank you!

And a Happy Anniversary to my parents in Heaven.

Ray was above-referenced accordion
before disassembly

Ray’s favorite picture, kept in his wallet. Playing
with the legendary Clarence Clemons

Practicing staff forms in the back
yard shortly before diagnosis

IMDb: Gone But Not Forgotten

Road to Singapore

About a month ago I was contacted by the President of the Breast Cancer Foundation of Singapore. She had discovered my book on Amazon (Beyond the Pink Ribbon: What I Wish I Knew About Breast Cancer Before I Got It) and wanted to know if I would be interested in participating in two events with their foundation. I was, of course, honored to be asked and, after researching their organization, agreed to do both.

One of the events is to be a speaker (pre-recorded message) at BCF’s Breast Cancer Awareness gala in October. The second, more-recent event was to participate in a panel discussion as part of International Women’s Day.

For those of you who know me well, being on video of any kind is not something I will readily sign up for, but I am really proud of this opportunity, as well as the final result. The moderator of the event is Singapore’s only female race car driver (Formula 1), Claire Jedrek. Joining me on the panel were Julianne Danielle Lim, ex-private banker, founder of Bold Strong Grateful Inc, and a breast cancer survivor, and Dr. Trishna Ramesh, breast imaging radiologist and advocate.

Here is the link to watch the event: https://www.youtube.com/watch?v=D3iJaYepbIA

I encourage you to watch all of it, as there is a lot of great information shared, but if you want to skip ahead, my first speaking part is at around 21:25. Yes, I was nervous. And tired! It was 10 pm here, while 10 am in Singapore (Thanks Daylight Savings Time). But I’m pretty happy with how it came out and I am excited for the upcoming opportunity in October.

Many thanks to Staphnie, Claire, the fellow panelists, and the entire staff of Breast Cancer Foundation of Singapore!

IMDb: Road to Singapore (1940)

Christmas Cookies

I recently posted to my Facebook page some pictures of sugar cookies that I decorated for Christmas and there was a great deal of interest in terms of recipes and techniques and such. So I thought I’d do a more detailed blog post with the information.

While I do try my best to eat a healthy plant-based diet as often as possible, when it comes to Christmas cookies, that is a tradition that I am not willing to pass up. I honestly don’t even eat many of them; I just love the tradition and memories of baking cookies with my mom. For as long as I can remember, I baked cookies with my mother for Christmas. Back in the day, we made thousands of cookies of varying types that we then gave away. I have memories of my first rolled cookies and how bad I was at it! And the fun of trying new recipes every year.

As time went on, my son and my nieces were part of the fun, and especially with the decorating of the sugar cookies. That was always a kids’ task. And when my mom passed away in 2014, I started a new tradition of baking with my cousin, Stephanie, and my Aunt Pauline, every year. My son participates when he can. We do it in homage to my mother and it’s a day I look forward to every year.

This year, thanks to Facebook reels, I got interested in some advanced cookie decorating. I’ve always tried to make pretty cookies, but I saw a bunch of designs and techniques that I figured I could handle!

---

First things first, though! My mother’s famous Sugar Cookie recipe:

• 1/2 cup margarine
• 1 egg
• 1 tsp vanilla
• 1/3 cup milk
• 1 cup sugar
• 1/2 tsp baking soda
• 1/2 tsp cream of tartar
• 2 1/2 cup flour

I like to cream the first five ingredients together first. Then I add the baking soda, cream of tartar and flour (a little at a time). Refrigerate for at least an hour (I generally make them the night before and refrigerate overnight.) Roll out the cookies on a floured table and cut with select cookie cutters. Place on ungreased cookie sheet and bake for 5-7minutes at 400. Do not overtake or they get too crispy/dry.

Allow them to cool before decorating.

---

On to the icing… super easy!

• 1 cup powdered sugar
• 4 tsp milk

Mix together with a fork to get out all the lumps. Depending on it’s use, you may need to add more sugar or milk to achieve desired consistency. For most cookies, you want thin enough that the icing flows but not so thin that it runs off the cookies. Over time, you’ll know.

I used to make a big batch and then divide into multiple bowls for coloring. But I find it’s better to do one at a time so it doesn’t dry out and get crusty. There are some cookie designs that need a few colors going at one time. The “wet on wet” requires you to apply to the additional colors while the first color is still wet. You also need to apply any sprinkles or other adornments while the icing is wet.

Examples:

For the wreaths, after applying the white, I added drops of green and then swirled the green dots with a toothpick to make leafy shapes. For the ornaments, while the white was still wet, I added the sprinkles or additional icing colors for them to meld together. You can make stripes with the other colors and use a toothpick to make designs. The hanger part of the ornaments is brown icing with gold sprinkles.

For other designs, you need to allow colors to dry first before applying the next color. This is a bit more time consuming, and my struggle is keeping the cookies from drying out while the icing dries. I do this by using lots of big Rubbermaid containers or putting them on a cookie sheet with another upside down cookie sheet on top.

I generally use a number 2 or 3 tip.

Examples:

For the holly leafs, I outlined in green and then “flooded” the rest of the cookie. Once dry, I outlined with the white icing, with a little blob that allowed the red candies to stick.

For the choo-choos (made specifically for my train-loving grandkids!), I did the wheels first so I knew where to outline the red part of the train. I didn’t need to wait for the colors to fully dry, but I wanted them set enough that they didn’t smoosh together.

For the Christmas trees, I used a different recipe for the icing. You can find a “Royal Icing Recipe” anywhere on the internet. The one I used had meringue powder which helps stiffen the icing. I wanted the icing thick to retain it’s shape and I used a small star shaped tip. I started at the bottom row and worked my way up, row by row.

From an equipment perspective, you can use icing bags or even just a plastic bag with a small cut in the corner to squeeze the icing out. I actually use this accordion style frosting bottles that can be found on Amazon. I think they give me more control, but I have been also using them forever so I think it’s just what I’m used to.

So there you go! Everything I know about sugar cookie decorating! I think I still need to up my game and may take a class. It’s all about continuous improvement! I mean, I’ve only been doing this for about 50 years or so! 🙂

Good luck with your own cookie baking, and let me know if you have any specific questions!

IMDb: Christmas Cookies (2008)

Sixty

When I was diagnosed with Stage III breast cancer just a few short weeks after my 50th birthday, I wondered if I would make it to 60. I knew so little about breast cancer and that diagnosis (along with the facing surgery, chemo, radiation, and more) scared the bejeezus out of me. I was not (and am not) ready to depart this world, but I didn’t know what the future would bring.

I stand here before you now, having reached my 60th birthday and breathing a sigh of relief. This is a big deal to me, especially after this year’s earlier scare and surgery! I made it! It’s been a crazy, challenging, yet wonderful 10 years. But I made it.

I feel great and am fully recovered from my February surgery. That lingering cough is all but gone. I am back to walking a few miles every day. For the most part, I have had no big impacts from that loss of a piece of my lung. Big hills and lots of stairs…? I miss it then!

I’m trying to enjoy every day and I most certainly appreciate every day. Feeling blessed.

Whew. I made it.

Bring on 70!

IMDb: Sixty (Short 2017)

A Reason to Celebrate

It’s been just about one month since I had my surgery and recovery has been going slowly, but surely. Some days are better than others in terms of energy levels, and I continue to manage through my annoying cough, incisions and stitches. I really can NOT complain, though, all things considered.

The big open issue was related to the pathology report. The actual report showed up in my portal on March 12th. I read it, to the best of my abilities, and thought maybe I was in the clear. There were several mentions of “no tumor seen” and “no morphologic or immunophenotypic evidence”. But there were also whole paragraphs of medical/scientific jargon that made me wonder if my interpretation was correct.

Since March 12th was a Saturday, I waited until Monday (3/14) to reach out to my surgeon’s office. Unfortunately, he was on vacation that week and I was advised that I needed to wait until I saw him in person on 3/23 (yesterday). So wait, I did, with anticipation of some good news.

I am happy to report that my surgeon did, indeed, confirm that there was no cancer found anywhere in my lung, in the nodules, or in my lymph nodes! What a relief, and what a reason to celebrate, for sure!

Thank you to all of you who prayed, sent good vibes, and otherwise supported me during this time! Whew!

So the natural follow up question is: If not cancer, what WERE these growing nodules?

And that’s a great question with no real answer. The surgeon indicated that chemo can “do weird things”, but as I’m almost 10 years out from my chemo, that seemed an unlikely answer. But who knows? I’m just going to be happy that Spot and Smudge, and every other nodule, lymph nodes and tissues samples, are NOT cancer.

The pathology report indicated the “Possibility of underlying connective tissue or autoimmune disorders should be ruled out” as, perhaps, a reason for the suspicious nodules. However, considering I have “zero symptoms” of either, he thought it was best that they just “leave me alone” for a while. I’m good with that.

The next question: Do I regret going through with the surgery? Nope. Given my history, the risk was too high that it was cancer and I didn’t want to take that risk. I know I’ll be back to my normal self soon, and I’m not feeling any life-changing limitations to my lung capacity or anything else. My adage is always “better safe than sorry”. Having the surgery was the most prudent / conservative decision I could make.

The other great part of the visit yesterday was getting my stitches out! Yay!

In terms of next steps: I do not need to go back to see him. I will just continue to follow up with my regular doctors. He would like a repeat CT scan in about six months for a new baseline.

As for the cough, the surgeon indicated that it was not unusual to have a chronic cough after a surgery like this. The nerves get aggravated with the things they stick down your throat and it takes a while for all that to settle down. I told him I had tried Mucinex, Claritin, Pepcid (acid reflux can cause a cough), etc., and he said there was no harm in trying those things; whatever helps. They did also prescribe an inhaler in case it was an “asthmatic-type response”. So I guess I’ll try that, too.

David and I celebrated the great news with a lovely lunch at The Cheesecake Factory, including a celebratory glass of wine. Cheers! Hallelujah!

Thanks again to all of you for your love and support!

IMDb: A Reason to Celebrate (2019)

The Nightmare Before Christmas

Monday vibes.

As my five new incisions heal and stitches dissolve, I can’t help but envision myself as a bit like Sally from The Nightmare Before Christmas. Lose a body part, stitch it all back together.

The incisions are healing nicely, but with healing comes itching and tightening and a bit of nerve pain. Occasionally, I feel like I’m being tased in my rib cage (or as I imagine tasing to feel like…) and those nerve pains are totally unpredictable.

The incision on my back is the only one with “real stitches” that one get removed until my appointment later in the month. For now, they stick out through my clothing and look like I have a spider on my back.

Weirdly, they are blue stitches and all my photos look like I drew them in with a ball point pen!

Hey, whatever it takes to hold us all together, right?

IMDb: The Nightmare Before Christmas (1993)

Cough It Up

It’s hard to believe it’s only been two weeks since my surgery! It definitely feels much longer than that.

I continue to focus on my healing, resting quite a bit over the weekend. I was tired, which is not unusual when you consider all the healing that is happening on the inside: lung, muscles, ribs, cartilage… Just because those five little incisions are healing, doesn’t mean everything is at the same pace.

My biggest complaint at this point is the coughing. After a lung surgery, coughing is good; it helps get all the gunk out and reduces your risk of pneumonia. In fact, post surgery, you are encouraged to cough (certainly a challenge with a chest tube).

But you know how they say too much of a good thing can be a bad thing…

My coughing isn’t persistent and it isn’t always terrible. But it is annoying. It rarely produces anything; pretty much it’s just a dry cough. Some days are worse than others and it hasn’t really impacted my sleep. But did I mention it’s annoying…? I can generally keep it under control with cough drops or a beverage (but not always). Sometimes, I feel like I’m going to cough up my lung. It can make speaking challenging at times, and my chest muscles are getting sore. I’ve got to hold my rib cage as I’m coughing to minimize discomfort to some of my incisions.

In doing some research, I found that some possible causes of long-term “CAP” (Coughing After Pulmonary resection) include injury of the vagus nerve, GERD, bronchial scarring, and thoracic anesthesia. I’m not saying that any of my coughing is related to this, but it was interesting to see that this is not an uncommon phenomenon and how many things can go wrong (as in most surgeries).

Per Science Direct, “persistent CAP is defined as the duration of dry cough no less than 2 weeks after pulmonary resection, no abnormalities in chest X-ray, eliminating postnasal drop syndrome, bronchial asthma, and oral angiotensin-converting enzyme inhibitors.” While I have no idea what that last one is, I do wonder if part of this isn’t related to postnasal drip. I think I’ll try some Claritin or something for a bit to see if that helps. If it does, then we’re good. If it doesn’t, then I’ll definitely raise it at my surgical follow up.

Wish me luck!

IMDb: Cough It Up (2014/TV)

Proper Binge

As I mentioned, I got permission to get back on the treadmill, and so today, I did just that. I started at a slower speed and did a shorter distance than normal, so as not to overdo it. I was also a good girl and wore my emergency fall thingy that turns the power off if I fall. I usually throw all caution to the wind with that thing, but given my lower-than-usual pulse and blood pressure, I thought it was prudent to follow the safety protocols.

One of the things I love about walking on my treadmill is my ability to binge-watch the shows that *I* want to watch. David and I have very different tastes in television shows. While I will happily (ok, maybe not happily, but perhaps willingly) watch the biography of Abraham Lincoln, or Jurassic Park for the 800% time, or even The Office (which I don’t love), returning the favor does not always happen. (I’m not saying it never happens…) So I just find treadmill time the best time to binge the shows that I love: Killing Eve is back on; Marvelous Mrs. Maisel returned a few weeks ago; This Is Us final season…

I got David a subscription to Masterclass for Christmas, so I am also trying to get through some of the classes. Presently, it’s Chef Thomas Keller and cooking techniques for me. Annie Leibovitz and photography for him. 🙂

But my latest binge choice? Mary McCartney’s “Serve It Up”. I saw an interview with her before the holidays and she was delightful. And, as a vegetarian, I was intrigued. But her show is on Discovery+, one of the few streaming services we don’t have. But, as luck would have it, David got an offer for a free 3-month subscription to Discovery+, so yay! I am now watching multiple episodes a day.

I want to be Mary McCartney when I grow up! She is lovely, her recipes are easy, she’s thin & healthy, she knows everyone, her dad is Sir Paul, and she’s got a British accent! What’s not to love? If you have Discovery+, definitely check it out. If you don’t and are looking for some yummy vegetarian recipes, you can find them on the Food Network website. She does use “a lot” of olive oil, but again, she’s thin and healthy, so we’ll forgive her for that and modify where it makes sense.

Quick updates:

• Steri-strips are all gone.
• I learned that the stitches in my back won’t be removed until my appointment at the end of March.
• Slept great last night, and in my own bed. Goodbye, couch!
• Almost all my tape glue is gone.
• Started weaning some of my meds today, and done with the antibiotic, so my tummy is happier.
• Feeling good!

IMDb: Proper Binge (2017)

I Am Grateful

I am feeling pretty good and have started weaning from my meds early! Yay! (Yes, with permission from my doctors). My surgeon gave me permission to start weaning the Gabapentin, since my pain is really not bad. It only hurts when I cough or move wrong. My family doctor gave the green light to start weaning from the beta blocker, since my heart rate is now a bit on the lower side. We need to find that balance, so let’s wean off and see how things go.

A week out from my surgery, I am really grateful for how good I feel. I did also get permission to start using the treadmill again, so I’m excited about that. So limited pain, permission to exercise, sleeping well, healing nicely, making progress on my spirometer, and moving about freely. I am still sleeping on the couch because of the cough (normal to clear out the lungs) and not wanting to wake David up.

I am really grateful, particularly, for all the love and support sent my way. Calls, text, Facebook messages, prayers, cards… so many of you have reached out to offer well wishes and ask if there is anything you can do to help. Flowers, gift bags, and food have all been delivered this past week! We are eating well (lasagna, homemade gnocchi, brownies, and more!)!

I’m relaxing in my comfy PJ’s and comfy socks, wrapped in my comfy blankets, having a hot cup of tea, feeling quite pampered by all my friends. I use my pretty pink pillow to help when coughing, and my hot/cold pads to help with those twinges of pain in my back. What more could a girl ask for?! (I AM looking forward to partaking in the limoncello gift in the freezer…!)

I. Am. Grateful. To all of you who have supported us in so many ways!

I do have to call our a particularly fun and thoughtful gift, given to me by a friend her two small children. Always a great mom who tries to teach her kids compassion, Chris had her children help create my gift bag. Wanting to fill it all with candy, Chris reminded them that I healing from surgery and tried to eat healthy. As so, I got a great bunch of gifts: clementines, Easter garland, a coloring book and pencils, fruit cocktail, a mug (“be loved”), handmade cards, and more. There was even a story with this gift:

Chris’ son explained that the bad cells in my body were like weeds, and those weeds were going to die off into the ground, and wildflowers — healthy cells — would grow in it’s place. Pretty wise for a 6 year old, wouldn’t you say? From your lips to God’s ears!

I. Am. Grateful!

IMDb: I Am Grateful (2019)

Tid-Bits

There are so many little, random musings and pieces of info I wanted to share, I thought I’d throw them all together in this tidbits post!

My surgery date was “Two’s Day”, 2/22/22. While at first, I thought this was a fabulous day for a surgery, I quickly became superstitious! I’m a believer in numerology and all that good stuff, so 2/22/22 seemed lucky (and I guess it was). But SO many people made comments about what a lucky date it was that I started feeling like we were jinxing things, so I stopped telling people!

There are few things as heavenly as that first shower when you get home from the hospital!

I wasn’t able to take a shower in the hospital, but one of my nurses suggested a “shampoo cap”. Intrigued and feeling slightly gross, I signed right up for this! It is, indeed, a shower cap that gets microwaved to warm it up. It is placed on the patient’s head, after which the nurse does a head massage to shampoo your hair. Then the cap is removed, the hair is towel-dried, and voila! Clean hair. What will they think of next?

Meals were ordered over the phone — no more circling your selections on paper. This was good and bad. Good because the food was somewhat made-to-order, so it was always warm when it arrived. Bad, because at 6:30 in the morning, you can NOT get through to them. Everyone is ordering breakfast at the same time. So I was on hold for 15 minutes (ok for me, but what about the elderly or the very sick?), and then I waited 1 1/2 hours for my breakfast. I’m thinking someone needs to look at staffing and throughput for those early hours! Or may I suggest an app…?

I was on a no-caffeine diet (see prior posts about heart rate), so no coffee or tea. I was able to sneak in a decaf coffee one morning, but when I tried to order decaf tea, that was a no. Also a surprising no-no… chocolate chip cookies! Once home I was still avoiding coffee, but finally emailed my care team for permission. I was approved to have coffee but advised not “to go crazy”.

Do you ever wonder what caused the random bruises on your body post-surgery? Some make total sense. The two puzzling me today are the bruises in the exact middle of my belly and on the inside of my wrist (no, not where the arterial blood draw was, nor even my two IVs). Just weird. Hmm.

Whenever I give up a body part, or part of one, I assume that I’m going to lose some weight. I mean, you are removing something from my body, and I’m giving up a few meals… that ought to count for something, right? Alas, this was not so. (At least I didn’t GAIN any weight, either.) Just so you know, the average pair of lungs weighs 2.2 pounds. So roughly, what they removed only weighed about 1/3 of a pound, so perhaps my expectations were unrealistic this go-round.

Bandage / tape glue is very hard to remove from your body. Three days of trying; much of it is still there!

I was surprised that ALL of my floor nurses were men. All very different personalities — Chris, Allen, Tim — but all equally compassionate, attentive, competent. Note: I am not implying that I didn’t think men could be awesome nurses. This was just the first time I ever had a male nurse, never mind ONLY male nurses 24/7, and it was kinda nice!

IMDb: Tid-Bits (1934)