Cycle 6 is a go!

  Six of fourteen cycles will be complete after today. My labs look even better than normal and that’s super exciting considering my chemo and medications due to chemo side effects all can impact my liver. I love being kind to my organs. 

 It’s October which is Breast Cancer Awareness Month. 

 I mentioned I would take a photo to show my hair and new glasses and I was able to get glasses that have interchangeable frames. If I’m going to have to wear glasses, I’m going to have fun with it! As for that hair, it’s gonna do what it wants to do.

 They’re from Pair Eyewear - http://rwrd.io/5ks1wyd?c

And since it’s almost Halloween:

Three Things

  

Lymphedema (LIM-fuh-DEE-muh)

   Lymphedema is a common side effect of cancer treatment, most often breast cancer surgery. Lymph node removal does not cause lymphedema in everyone. Only 3 or 4 out of every 10 people who have this procedure develop lymphedema. Further, radiation lymphedema is a side effect of radiation therapy that can cause swelling, aching, or a feeling of tightness in an arm (or leg depending on the area being radiated). It occurs when radiation therapy damages lymph nodes, which can prevent them from working properly and cause fluid to build up in the surrounding tissues. 

 During my surgery, I had four lymph nodes removed from my left side and two from my right side. Zero of them were positive for carcinoma. This was great news on the cancer front, but only time would (and still will) tell if I would have lymphedema from the removal of those lymph nodes. I also had a focused radiation field that included by left lymph nodes. So far so good. I delayed writing this post as I didn't want to jinx myself! 

 So how did I help to avoid getting lymphedema (so far)?

• I wore a silicone wedding band in case my hand started to swell. I did not want to have my actual metal wedding rings cut off my hand.
• I listened to the surgeons and radiation oncologists to not massage my left side as it could overload my lymph nodes. I really wanted to do scar massage but stopped myself due to their instruction.
• I performed only gentle range of motion despite wanting to go full PT on it. Again, instructions from my surgeons and radiation oncologist.
• I always knew I had the ability to see a physical therapist who specializes in lymphedema if we began to see signs. I recommend you have one in your back pocket to get into as soon as possible if you do see early signs of lymphedema.
• Signs of lymphedema include: 
• Swelling in your arm, hand, breast, or chest wall.
• Feeling of heaviness, aching, or tightness in your arm.
• Your arm gets tired easily.
• Pain in your arm.

 There is research going into sentinel lymph node biopsy for early stage breast cancer as we always know, less is more when removing your own tissue, but removing the correct things to ensure it does not spread is crucial. According to this study, "These findings suggest that patients with BC of a diameter equal to or smaller than 2 cm and a negative result on preoperative axillary lymph node ultrasonography can be safely spared any axillary surgery whenever the lack of pathological information does not affect the postoperative treatment plan." We live in a time when optimal research is being done so we can expect ongoing advancements in recommendations which is why your care team is so important!

 

Person-First Language

  One of the most memorable parts of my physical therapy education was when we learned about person-first language. Walk into any hospital or doctors office and you’ll hear, “I have the knee patient” or “I’m seeing the heart patient next”. What we’re forgetting when we say things like this is that we’re putting the medical condition over the person. Instead, you would hear me say “I have the patient (or person) with the knee replacement” or “I’m seeing the patient (or person) who had the heart surgery next”. I think we get so worried about HIPAA that we ignore that we’re working with (and truly for) people first. 

 It has become even more evident as my husband and I have spent way too much time in medical institutions as patients. My husband is referred to as the Parkinson’s patient, and I, the cancer patient. Neither of us are this as Parkinson’s and cancer don’t have us, we have Parkinson’s and cancer. 

 

 If you work in healthcare and this is a new concept, consider it for your patients. If you work in healthcare and this is not a new concept, consider coaching others when you hear them using less than ideal patient language. If you’re not in healthcare and have friends and loved ones with various diseases or disorders, consider how you may use this when communicating with them. Do remember, a person’s name is always best.

A Tale of Two Diseases

  This post will be heavy, but light, all at the same time. Many of you know the other disease process I've been living with, but many of you do not. Fortunately, this disease process is not my own, but unfortunately, it is my husband's. A well known quote comes to mind from Charles Dickens' A Tale of Two Cities and it goes a little like this "It was the best of times, it was the worst of times..."

 Everyone sees a pink ribbon and knows its tie to breast cancer. But who knew Parkinson's has a ribbon? It's gray. So this is our Miller ribbon.

 My husband was diagnosed with Parkinson's Disease in mid 2019. He was diagnosed by a Nurse Practitioner who, when asking him to stick out his tongue for her exam, noticed tongue fasciculations. Tongue fasciculations are spontaneous, and intermittent contractions of the tongue muscles. Kudos to her for referring him to a neurologist. He feels he likely had it prior to this based on the symptoms he now knows as Parkinson's symptoms, but official diagnosis using levodopa to improve symptoms was official as of 2019.

 People say vows every day. But the statement "in sickness and in health", is one of the most important lines. I am grateful daily that he didn't run for the hills when I was diagnosed. He is also grateful that I didn't run for the hills when he had his diagnosis. This connected us at an even deeper level than before.

 He mentioned many times that he didn’t feel like him anymore, and I always said I understood. I truly thought I did, as I have experience with people with Parkinson’s as a physical therapist, but it wasn’t until I didn’t feel like me, like I was someone completely different in someone else’s body, before I truly understood. He then said “now you get it”. It was at that moment that we connected in a way only few get to connect in their relationships. 

 All this to let you know we're currently in Tucson, AZ for his deep brain stimulator surgery. He had one of two surgeries on October 10th for the lead placements. He has his second surgery this week to connect the leads and put the neurostimulator in his left chest (like a pacemaker). 

 I share this, as many of those who will go through cancer, may also have an immediate loved one who is also going through another medical condition, and neither is any more important than the other. Sometimes, a treatment may become a higher priority due to outcomes if not performed timely, but neither truly trumps the other. I asked my husband for permission, as this is a very personal thing for him, but he truly feels that others need to understand the impact that going through tough times can have on two people. It may sound absolutely bonkers, but it is somewhat of a relief at times to think of his needs for Parkinson's treatment rather than my needs for breast cancer treatment. He's also said the same, as he was mainly focused on my breast cancer treatments and didn't have time to worry about his upcoming brain surgery.

 Writing this post prompted me to look up the quote I started above, and the full quote is:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of light, it was the season of darkness, it was the spring of hope, it was the winter of despair.”

 The paradox struck me as apropos. The concept of paradox continues to present itself with my diagnosis of breast cancer. 

Cycle 5 is a go!

 

 So excited that I'm staying right on schedule! Cycle 5 of KADCYLA today. My labs were great again which shows my body's ability to take care of itself, even through I'm receiving very cytotoxic (toxic to living cells) chemotherapy.

 

 Unfortunately, the dexamethasone appears to have not been the right thing to try to get rid of my acneiform rash which is my grade 1 drug reaction to KADCYLA. It initially appeared to help but then came back with a vengeance and then some. Again, I'm fortunate that this beast is not more itchy or painful. Just putting it out there to discuss with your doctor appropriately if you have a reaction like this in your treatment.

Karma

 I’ve been thinking a lot about karma. Being a positive and kind person, at face value, I thought “with my karma, how could I get cancer?” So I decided to do some research (surprise, surprise) and realized karma is bigger than the sayings:

What goes around comes around.

You get back the same energy you put out.

You reap what you sow.

 Karma is a Sanskrit word, which literally means action. 

 We do often find ourselves thinking that when we do good things, only good things should come, but that isn't the actual meaning of karma. As stated above, it is more meant to guide you through this path of life.

 I can now see that although I'm a positive and kind person, cancer has guided me in a much different way than I otherwise might have taken. I can see how the laws of humility, connection, focus, here and now, patience and reward, and significance and inspiration have played a role in this path of my life.