New England Visit

TRIP TO NEW ENGLAND

Here it is, the end of June, and I am just getting around to posting about our exciting adventure from the middle of May!

The Robbins family had been unable to travel for a while due to my cancer treatments and weakened immune system. The pandemic further complicated things. But I'm thrilled to say that we finally managed to make our way to Boston to visit our son Nick and to meet his wonderful girlfriend, Alison!

Alison, Pam, Nick, Conor, Ray

Alison's charm had won us over even before we had the opportunity to meet her in person. We adored her even before our face-to-face encounter! And now we love her even more! 

FRIENDS WHO ARE FAMILY

On the first night of our visit, we got to meet Nick's dear friends, Jen and Yannick. It was instantly evident that they were not just Nick's friends but his extended family in New England. We had so much fun, and we loved them both!

We had a wonderful time at The Irish Cottage Restaurant and Pub, enjoying a variety of scrumptious dishes, strong drinks, and delightful conversation!

Ray, Jen, Yannick

And then there was ice cream.......

NEWBURYPORT, MA

Agave Mexican Bistro

We had heard about the delicious food at Agave Mexican Bistro, and the food and drinks did not disappoint! And I might have overindulged in both!

SEA LEVEL OYSTER BAR

Sea Level Oyster Bar was another great restaurant we visited in Newburyport.

I was so excited to finally enjoy some fresh seafood again! Sea Level did not disappoint....my fried scallops were delicious! 

                             

And then there was the time we met that weird British guy.......

MEET THE PARENTS

On Saturday, we had the pleasure of visiting Alison's parents' lovely home for a delightful meal and fantastic company!

Kathy, Katie, Tom, Conor, Ray, Pam

They welcomed us warmly and made us feel at home from the moment we arrived. 

Nick's friends, Alex and Tom, were in town for the day, and we were happy to have them join us!

Alex, Tom, Alison, Nick, and Alison's adorable nephew-Vincent.

BEACH DAY WITH KATHY

On a day when Nick and Alison were busy with work, Kathy kindly offered to drive us up the coast to view some of the beautiful beaches. I can't tell you how much I enjoyed seeing the ocean again after such a long time.

Kathy was a great companion and an excellent tour guide!

                                             

                        

We spotted a beautiful solitary flower flourishing amidst the rocky terrain. Conor kindly ventured down to snap a photo for me.

           

We stopped at a lovely roadside place for ice cream on our way back to Merrimac! I didn't get photos of the ice cream, but I did get some cute shots of Kathy and Conor.        

  

                                                   

BOSTON IN THE SPRINGTIME

There is nothing quite like Boston on a nice spring day!

                                                      

Food and drinks at The Black Rose. 

Since we would be leaving early the next morning, Alison's sister Katie and Katie's handsome son Marty stopped by Nick and Alison's to say goodbye after Marty's baseball game. I wanted to make sure to share a photo of them all - Katie's son Marty is absolutely adorable! 

        

Our trip was beyond amazing! Seeing Nick again and meeting Alison and her family filled my heart with joy!

The welcome we received was heartwarming. There are so many more memories to share, but this post is already pretty long, so I will save those for another time!

I can't wait for our next visit!

6-YEAR MASTECTOMY ANNIVERSARY

Six years ago today, I had a mastectomy. 

I remember being so nervous but, at the same time, happy that we were finally going to get this thing done. I felt like it had been so long since my diagnosis and learning that I would need surgery. 

I was diagnosed on October 3, 2016, and here it was April 7, 2017. It had been determined that I would receive chemotherapy to shrink the tumors before surgery. And it worked. The tumors shrank quite a lot. But now I had finished chemo and just wanted the cancerous boob GONE!

My right breast was removed, along with 11 lymph nodes. I was so afraid to think about what was underneath those bandages.

I left the hospital a few hours after my surgery. I was shocked and a little worried about going home so soon after surgery, but I didn't argue with them.

Some things are a bit blurry when I reflect on that day, but I remember the ride home from the hospital. I remember sitting in the front seat and zoning out while Ray was driving, and all of a sudden, I saw an ice cream sign. I literally yelled, "Ray, STOP! I NEED ice cream! We had already passed the entrance into the parking lot of the ice cream place, but Ray somehow managed a quick U-turn, and the next thing I knew, we were sitting there, parked in front of an ice cream shop I had never even noticed before today, and Ray was asking me what kind of ice cream I wanted!

It's funny the things you remember sometimes. First, of course, I remember the ice cream! But much more importantly, I remember my husband caring for me, nursing me, and, most of all, loving me through those rough days. 

I can't say that every day of these past six years since my surgery has been easy, but I can say without a doubt that I am thankful for each and every one of them. 

So yes, life is a blessing. 

And being surrounded by loved ones while going through a cancer diagnosis and treatment, or any other crisis, is an immeasurable blessing. 

I feel so sad when I think about anyone going through such a time of distress and fear without the love and support of friends and family. 

Many of my family members and friends live out of state, but I know they are always a phone call away when I need them, and I could not have made it through these past few years without them!

I am blessed.

LYMPHEDEMA

Recently I shared my annoyance and frustration about my lymphedema. I am happy to report that the swelling has significantly decreased, and my condition is not as severe at the moment.

In my previous post, I promised to discuss the treatments and management techniques that have worked well for me. However, before delving into that, I would like to address two questions that were raised in response to my last post.

IS THERE A WAY TO PREDICT IF I WILL GET LYMPHEDEMA? CAN I PREVENT IT?

There is no surefire way to predict who will get lymphedema after breast cancer treatments. And there is no surefire way to prevent it. Women who exercise as soon as their doctor permits after surgery or other treatments and follow proper skin care suggestions seem less likely to develop it. I was told that removing several lymph nodes, combined with radiation, put me at a higher risk of getting it at some point.

Although there is no cure for lymphedema, there are treatments that focus on reducing swelling, managing flare-ups, and preventing complications. 

TREATMENTS MAY INCLUDE

• Bandages. Compression can help to reduce and control lymphedema by limiting lymph fluid buildup and providing support to help muscles pump fluid away. 
• Diet and weight management. Eating a healthy diet and controlling body weight is essential for lymphedema treatment.
• Exercise. Exercise helps to improve lymph drainage. For example, walking, light weight lifting, yoga, swimming, and Tai Chi may encourage lymph flow. Your doctor, OT or PT can advise on specific exercises.
• Massage therapy. Massage by someone trained and certified in lymphedema treatment can help move fluid away from the swollen area.
• Infection prevention. It is so essential to protect the skin in the affected area from drying, cracking, and infection. Your healthcare provider can advise you on how to care for your skin and nails to help prevent serious problems.

If you have recently undergone breast cancer treatment, I first suggest you make an appointment with an expert trained in lymphedema therapy. You may need a referral from your doctor. 

A therapist will most likely recommend complete decongestive therapy (CDT), a non-invasive treatment for lymphedema. This therapy includes various techniques, including manual lymphatic drainage (MLD), compression, exercise, and skincare. CDT reduces lymphedema, increases mobility and range of motion, and decreases the risk of cellulitis. 

MANUAL LYMPHATIC DRAINAGE (MLD) AND HOW IT WORKS.

MLD is a gentle massage technique that involves skin-stretching movements using a very light touch. The goal is to move the lymphatic fluid from swollen areas toward the lymph flow and into areas that are draining well. 

This MLD on the skin also helps to soften any hardened tissue.

Deep breathing methods are also used to enhance the positive effects of MLD. Therefore, your MLD session will most likely begin and end with some deep breathing exercises.

Your therapist can also teach you how you can do lymphatic drainage by yourself at home. This is called simple lymphatic drainage or SLD.

LYMPHATIC DRAINAGE PUMP

Your therapist might recommend a pneumatic compression device if these techniques don't work. Then, when appropriate, your healthcare provider can prescribe this device for home use. In many cases, your insurance will cover these devices. 

Yes, it looks daunting, but it's okay once you get used to it. And that's coming from someone who can't stand confinement of any kind! 

I saw an OT who is trained in lymphedema therapy. Initially, I saw her twice a week for MLD and arm wrapping. My visits with her were great, and she would get the swelling down quite a bit, but it was decided that I needed the extra help of the lymphatic drainage pump to use at home. She also taught me to do SLD and to wrap my arm myself (with help from the hubby) and gave me some exercises I could do at home.

In addition to using the lymphatic drainage pump, I do stretching exercises and lift light weights 4 or 5 times weekly. I try to get in a walk regularly, but if the weather doesn't permit a walk, I put on some music and do some gentle dance-type movements. Anything that keeps you moving is helpful.

I will be happy to answer any specific questions you may have about my struggles with lymphedema. I will also put together some of the exercises I do regularly. I will post them here in the next few days.

                                        

SCANXIETY PART 2-SCAN RESULTS

So, yesterday I had an early morning appointment at my Cancer Center. And when I say early, it really felt early! Between losing an hour due to the time change over the weekend, the thunderstorm that woke us up early Sunday morning after only a few hours of sleep, and then staying up late to watch the Academy Awards show on Sunday night, getting up at 6 am Monday morning was tough!

DOCTOR'S VISIT

First, I saw one of my favorite people...Doctor Saker's nurse, Patience, AKA The Vein Whisperer! Patience is not only one of the sweetest young women you will ever meet, but she could get that needle in a vein with her eyes closed! Man, she's good at her job! So, we chatted while she weighed me (WHAT??? ARE THOSE SCALES RIGHT??), took the vitals and some blood, and then took me to one of the exam rooms to wait for Dr. Saker. 

I waited much longer than usual for the doctor to come in. I wasn't upset with the wait because it is a Cancer Center, and I'm actually always surprised by how quickly the doctor comes in. However, I was getting very nervous sitting there for so long waiting to hear those test results!

Finally, Dr. Saker came in, apologized for the wait, saying that Monday had started out with a bang, and then........

DRUMROLL PLEASE......

He said, with a smile on his face...GREAT NEWS! The scans looked great! After talking about what a great job the meds were doing and going over a couple of other things, he said there is a chance that the sleeping devil (cancer) will wake up at some point and make another appearance, but it could be years before that happens. The Faslodex injections and Verzenio are doing their job and have fewer side effects than Ibrance. 

After all of the 'scanxiety' I've experienced over the past few weeks, I could finally breathe a sigh of relief! I had been more worried about the bone scan because although I had a CT scan in September, it had been a year since my last bone scan.

We also briefly discussed my ongoing battle with weight loss and lowering my cholesterol, but he said he thinks I still have time to do both before I see my PCP in about 5 weeks! But I'll talk more about those issues in another post.

The first person I saw when I entered the infusion suite was another of my favorite people who works there...Lisa! 

Lisa and I chatted for a few minutes while I waited to receive my Faslodex injections and B12 shot. When I told Lisa about my test results, I got a hug and a  heartfelt "PRAISE GOD!"

And I am......PRAISING GOD! 

SCANXIETY PART 1

Let's talk a bit about Scanxiety. 

                                  

WHAT IS SCANXIETY?

Scanxiety is short for scan anxiety, a typical response to having any type of cancer-detecting scan. Whether the scan is being done for diagnosis, to monitor ongoing treatments, or to check for a recurrence, it really doesn't matter; the stress and worry associated with these scans can wreak havoc on our emotional well-being. 

Not everyone experiences a full-blown episode of scanxiety. Some people may only experience minor anxiety, while others, like myself, feel intense panic or distress.

In talking to the people in my cancer support group, I realized that for some, scanxiety only occurs after their scans while waiting on results.

BEFORE SCANS

For some people (me...me...me!), the stress and anxiety begin as soon as a scan has been scheduled. I immediately start to worry that the scans might show something to indicate I am no longer in remission. What if my treatments are no longer working?
 
DURING SCANS

I suffer from claustrophobia, so I have a tough time inside a small, cramped scanner. Even those who aren't claustrophobic might feel uncomfortable and even a little panicked. Also, some of the tables you have to lie on are hard, and you might find it difficult to lie still in one position for a long time. 

Although I'm no longer as stressed over the actual scans as I once was now that I've experienced (and survived!) multiple CT, Bone, PET, and MRI scans, I still have to fight the feelings of claustrophobia each time. My doctor is aware of my claustrophobia and prescribes Xanax to take before scans, which helps immensely.

AFTER SCANS

After getting a medical scan, it's totally normal to feel anxious while waiting for the results. My doctor usually sets up an appointment about a week after the scan to chat about the results with me. Even though I can check out the results on the patient portal a few days before my appointment, trying to figure out all the medical jargon on my own can be risky. I once freaked out for days over nothing because I misunderstood something as bad news. I know it's best to wait for the doctor to explain everything, but man, waiting is tough!

SO, WHAT ARE THE SIGNS OF SCANXIETY?

The following can be signs of scanxiety:

• Trouble sleeping.

• Not feeling hungry.

• Trouble focusing.

• Faster heart rate and possibly higher blood pressure than usual.

• Moodiness

• Having sad or worrying thoughts.

• Fear of a recurrence or spreading of cancer.

TIPS TO HELP MANAGE SCANXIETY

Acknowledge your feelings. Allow yourself to feel angry, scared, or just plain ticked off. You might tend to tear up or become emotional more easily than normal (which ticks me off), so just acknowledge what's going on and be gentle with yourself.

Distract yourself. Do something you enjoy: Binge-watch a TV show, read a book, listen to music, eat your favorite food, or call a friend to take your mind off your worries and anxiety.

Meditate. Whether your method of meditation is yoga, praying, listening to calming music, or just sitting quietly and releasing those negative thoughts in your head, find what helps you relax and do it. For me, prayer is essential.

Find your mantra. Adopting a positive mindset can help alleviate some of your scanxiety worries. For example, you can compose a list of inspirational quotes or motivational affirmations to comfort you during this difficult time.

Share your story. I started my blog to share my story with those who might be facing a new diagnosis, hoping I might help them through their cancer journey. But I also found that blogging helps me take my mind off my anxiety by talking to people going through a similar situation.

And why am I writing about scanxiety today? This past Wednesday, I had bone and CT scan. I have an appointment with my oncologist tomorrow, and right now, I'm trying to avoid that patient portal! 

I'm going for a short walk right now before this scanxiety gets out of control! 

I'll be back after my doctor's visit with SCANXIETY PART 2-SCAN RESULTS. Good thoughts and prayers are appreciated!

LYMPHEDEMA IS NOT JUST A LITTLE SWELLING

Most of you are familiar with this little box, right? Those of us on Facebook see it every time we log on to our accounts. 

              

One of my morning rituals is to sit down with a cup of coffee and log on to FB to see what my friends are up to. I typically scroll past the "What's on your mind?" box since I'm generally not coherent enough to share my thoughts until after my second cup of coffee. This morning, however, I just sat glaring at it while thinking.......

"Want to know what's on my mind, Facebook? Lymphedema SUCKS! That's what's on my mind! Thanks for asking!"

I didn't share that thought on FB, but I decided to share it here because I'm really frustrated. I did warn Y'all that I'm prone to pitching the occasional hissy fit, and I am definitely in hissy fit pitching mode today!

One of the things I find so frustrating about having lymphedema is that sometimes, after working diligently to get it under control by doing everything I've been taught to do, I have a significant flare-up for no apparent reason...WTH??

And that's what I'm dealing with right now. I've been doing my exercises, wearing my compression sleeve, and doing everything else daily(ish) that my OT wants me to do for my lymphedema, but here I am with a big fat Popeye arm this morning.

Maybe I was hesitant to mention my lymphedema flare-up on FB this morning because the last time I spoke about it there, someone asked, "Isn't lymphedema just a little swelling? Like when you consume too much salt??"  I felt like SCREAMING!! NOOO, it is NOT JUST A LITTLE SWELLING!

In all fairness, most people not affected directly by lymphedema probably don't know much about it. I had no clue what it was myself until my surgeon talked to me about it before my mastectomy. 

WHAT IS LYMPHEDEMA

Here is a brief description of lymphedema from a pamphlet I was given after my mastectomy--

Lymphedema is tissue swelling caused by an accumulation of protein-rich fluid usually drained through the body's lymphatic system. It most commonly affects the arms and legs but can also occur in the chest wall, abdomen, neck, and genitals. 

Lymph nodes are an essential part of your lymphatic system. Lymphedema can be caused by cancer treatments that remove or damage your lymph nodes. In addition, any type of problem that blocks the drainage of lymph fluid can cause lymphedema. 

Severe cases of lymphedema can affect the ability to move the affected limb, increase the risks of skin infections and sepsis, and can lead to skin changes and breakdown. 

TWO TYPES OF LYMPHEDEMA

Primary Lymphedema. Primary lymphedema is a rare disease that occurs when the lymphatic system has not developed adequately or is not functioning as it should from birth due to a genetic condition. It is called primary because the impairment is not due to a secondary cause like illness or injury. 

Secondary Lymphedema. Secondary lymphedema can happen if the lymphatic system is damaged from surgery, trauma, or radiation therapy. It is most common in people who have had breast cancer treatment, but not everyone who has breast cancer treatment gets lymphedema. 

EARLY DIAGNOSIS AND TREATMENT

Unfortunately, I was one of the ones who developed lymphedema shortly after my radiation therapy.

My surgeon had warned me that I was at high risk for developing lymphedema since he would be removing several lymph nodes (it turned out to be 11) and because I would undergo 33 radiation treatments.  

I am so thankful that my incredible surgeon, Dr. Quill, discussed the importance of watching for any signs or symptoms of lymphedema. He explained that diagnosing and treating mild and early-onset lymphedema is critical for halting the progression of this lifelong and often debilitating condition. 

Dr. Quill said that even the best oncologists rarely discuss lymphedema with their patients. Instead, they treat your cancer but don't address other aspects of the disease that can impact your life afterward, both emotionally and physically.

SYMPTOMS OF LYMPHEDEMA  INCLUDE:

• Swelling
• Heaviness and tightness, which might include tighter-fitting jewelry
• Small blisters that leak clear fluid
• Dull aching or other pain
• Skin thickening or hardening, which can sometimes look like an orange peel

Symptoms may occur gradually over weeks, months, or even years after cancer treatment. 

HEALTH COMPLICATIONS OF LYMPHEDEMA

Skin infections (cellulitis). The trapped fluid provides fertile ground for germs. The slightest injury to the arm can be an entry point for infection. The affected skin can appear red and swollen and is usually painful and warm to the touch. Your doctor will most likely want to prescribe antibiotics to keep on hand so you can start taking them immediately.

Sepsis. Untreated cellulitis can spread into the bloodstream and trigger sepsis, a potentially life-threatening condition that occurs when the body's response to an infection damages its own tissues. Sepsis requires immediate emergency medical treatment.

Skin changes. In people with severe lymphedema, the skin of the affected limb can thicken and harden to resemble an elephant's skin.

Cancer. A rare form of soft tissue cancer can result from the most severe cases of untreated lymphedema.

So, NO, lymphedema isn't "just a little swelling." 

And yes, lymphedema is a chronic disease, and sometimes flare-ups seem to come out of nowhere. However, with proper education, prevention practices, and management techniques, we can often prevent these flare-ups or at least manage the symptoms and get the swelling under control. 

I'm not an expert on lymphedema by any means, but I have learned a lot about it through online research, from my lymphedema therapist, and, of course, through my own experience. 

I will discuss some suggested treatments and management techniques in an upcoming post. I'll also share some things that have helped me with my journey with lymphedema. And hopefully, I will have good news about this most recent flare-up of mine! 

If you have any questions, feel free to ask!

PS. As I struggled with writing this post and figuring out how to explain lymphedema, I decided to take a break and check my email. One of the first emails that popped up was from a place where I purchased some of my compression garments. It was a reminder that today is March 1st and that March is Lymphedema Awareness Month.

Tom Brady Retired

Okay, so I knew there was a very real possibility Tom Brady would soon retire....again. But I was still really sad to hear the news this morning. 

I love Tom Brady, AKA My Tommy, but man....it's like he's just trying to ruin my Birthday...AGAIN?! My BD is February 4th...like he couldn't wait a few more days to make me sad???

I'm sure this will sound silly to many of you, but I credit Tom Brady for helping me through some tough times since I was first diagnosed with breast cancer.

I grew up in GA but was never a fan of NFL football. Ray and I attended one Atlanta Falcons game in the early 80s when we were given free tickets for the Falcons Clubhouse, complete with unlimited free drinks and food! Fuzzy Navels made the evening fun, but I don't think I watched a single play of the actual game! 

Even though my son played football from the age of 6 until he graduated college, and I attended the games, I never learned the rules of the game and didn't know what was going on most of the time. When asked what position Nick played, I would say, "I don't know, but he looks adorable in his uniform!" LOL

While living in CT, my family became New England Patriots fans, and I would occasionally sit and watch a Pats game with them. I did enjoy watching Brady, Gronk, Edelman, and a few other players. Still, I usually found something more interesting to do!

EMBRACING FOOTBALL AFTER ALL THESE YEARS

Then, I was diagnosed with breast cancer and started my chemo treatments in early October 2016, just when football season was heating up.

I was housebound most of that time because chemo treatments left me so immunocompromised, and I would get pretty bored while Ray and Conor watched football all day on Sunday. And along with the boredom came too much time to think and stress over breast cancer!

So, one Sunday afternoon, I was just so bored that I decided to join the guys in watching a Patriots game, and it was actually pretty exciting!

I actually started to look forward to gamedays! Pretty soon, I even understood the game! And I was becoming a big Patriots fan!

WEARING MY PATS HAT ON CHEMO DAY

It didn't take me long to become a rabid Tom Brady fan! I learned that Tom's Mom was also undergoing breast cancer treatments then. He often spoke about his Mom with such love and concern during that time, making me like him even more.

OLD??

I kept hearing people talk about how Tom was just SOOOO old, and they constantly speculated on how long he could continue to play at his "advanced old age?" Man, that really pissed me off! Good grief! If he was old...what the heck did that make me??

I've never known what it feels like to be a real athlete, but I used to run (and I use the term 'run' very loosely) marathons. 

Once when discussing my running with a doctor, he looked at me and said, "Let's say you are an old used car with limited mileage left. Would you want to use those miles up by running marathons??" WTH?? Did he just call me an old used car?? Every time I crossed a finish line after that conversation, I would yell, "F U stupid doctor!" 

So no, I don't know what it feels like to be an athlete, especially one who is the GOAT! But I know what it feels like to be told you should give up doing something you love simply because of your age. 

At some point, my mantra became...."We, old guys, are gonna keep going! We are gonna keep winning! We are not done yet! We have a lot more left to do! We've GOT THIS!"

At the end of each season, I say, "C'mon, Tom, you HAVE to keep fighting, playing, and winning! I  need you to come back for another season!" 

So, I guess Tom's hanging in there with football, and my hanging in there with my breast cancer treatments possibly became a bit entangled in my head! But what can I say? It was an emotional time! 

BRADY FAN FOREVER

I loved Brady when he played for the Patriots, and I continued to support him when he moved to Tampa Bay. Heck, I named my puppy Brady! 
I am still a Patriots fan, but first and foremost, no matter which jersey he wears, I am a Brady fan!

    
 
BUCKET LIST EVENT
 
I never thought I would see Brady play a game in person, but Ray and I were able to attend a Bucs vs. Falcons game in Atlanta last year! It was definitely a huge bucket list event for me! We had great seats and just a wonderful time all around!


                          

Brady and Gronk

                                                            

My Selfie With TB12!

So, I was sad to hear the retirement announcement, and I will miss seeing Brady on the football field.
 
I was talking to my BBF Deb this morning about the announcement and how important watching Tom play became to me during such a difficult time. I told her, "It's almost as if  God sent me comfort when I needed it most....in the form of Tom Brady and football!" Yeah, weird, I know, but God works in mysterious ways!

PS. Dear, Tom-You can always change your mind. Again! PLEASE????!!