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.