Human Touch

I’m a WASP (White Anglo Saxon Protestant) and I was raised in the Midwest. When I moved to Orlando for college a few decades ago, I was astonished at how much unsolicited touching occurred. I often had to explain to people that it wasn’t that I didn’t like them, it was just that they were in my personal bubble without invitation and it freaked me out. As an introvert, I didn’t usually say much in the moment, just probably had the weirdest look on my face and unnatural stiffness as I tolerated the unexpected touching.

Sorry to all the well meaning people who just wanted to give me a hug! Really, I’m sorry. I didn’t get it and it’s taken me some time to adjust.

I think I’d adjusted a bit in the few decades I was in Orlando for college and after law school to the hugging and other cultural differences involving personal touch and then I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017.

All at once, the majority of the human touch I received caused pain. From the phlebotomists who stuck me to draw blood regularly to the surgeons who cut me open for a variety of reasons to the nurses who would access my port with a gigantic needle to give me medication to the physical therapists who would push me through pain to strengthen my muscles, the medical treatment meant my body was touched over and over and over, causing pain over and over and over. Don’t get me wrong, I appreciate the medical treatment that is keeping me alive, keeping my bones strong, keeping my pain in check, keeping me active and connected with my children, it was just a huge adjustment and has changed my perception of human touch irrevocably.

This isn’t an indictment of the healthcare workers who had to do their jobs. Most did their best to be gentle, most tried very hard to adjust while watching my reactions, and I know that most of it was just necessary. I’ve learned that I have to give feedback, that I have to speak up when something isn’t feeling good, that they don’t read my body language well all the time and my high pain tolerance often gives people the wrong impression.

Yet …

  • I will never forget the ex-Marine with biceps the size of my thighs who injected me with radiation for the 3.5 hour MRI of my back in preparation for surgery, and was so gentle and kind and nearly cried with me when I was writhing in pain and trying so hard to not freak out about being in a closed tube that long.
  • I will never forget the phlebotomist in the hospital who had to stick me in my hand every 2-3 hours and when I cried and told him to stop, refused to touch me any longer until they’d accessed my port, which I’d been asking to happen for two (2) days.
  • I will never forget the paramedic doing a rotation in the emergency room who was training and his access of my port was literally the second time he’d ever done it and I didn’t feel a thing.
  • I will never forget the nurse who, at my very first chemo and the very first time my port had ever been accessed, who declared that she’d never had an issue in more than 20 years and missed the target in the middle of the circle, causing intense pain since I’d had surgery to insert the port a mere two (2) days earlier.
  • I will never forget the nurse who insisted on accessing the vein in my hand in preparation for surgery, did something I couldn’t see and I got to see my blood spurt out and spill on the floor.
  • I will never forget the anesthesiologist who refused to access my port when the IV in my arm failed right before a surgery and accessed a vein in my hand while I was shouting, “I don’t consent, I don’t consent,” and told the nurse anesthetist to put me under immediately. I woke up after that surgery with my port accessed, both veins in the crook of my elbows accessed (including my left arm that sported a tag warning that they shouldn’t) and my right hand. I made sure to report his violation immediately and nothing happened.
  • I will never forget the people who were gentle, even while they were hurting me, and I will never forget the roughness of the more “experienced” nurses who told me I couldn’t possibly feel anything when I was, again, writhing in pain. By far, the newer nurses and the male nurses were the most kind and the most gentle. These touches stay with me and the memory of those touches are recorded in the very cells of my body.

What I do know now, is that I more than appreciate the human touches from people who are not doing something medical to my body. I appreciate more the hugs that were commonplace here in Miami before the pandemic, the air or real kisses on the cheek from men and women alike, the invasions of my personal bubble that communicate kindness and love and happiness that I’m me. I’m not always comfortable in those embraces, but I’ve learned that humans need human touch, humans need to know that they are loved and accepted through touch, and this lesson will stay with me, recorded in my very cells, irrevocably.

Expectations, Part I

I’ve been thinking a lot lately about expectations and particularly the expectations that have been unfulfilled in my life since I’ve been dealing with Stage IV Metastatic Breast Cancer (MBC). For me, I often don’t realize in the moment that something happens that an expectation has been unfulfilled, it’s usually once I have time to process what has happened that it occurs to me. Sometimes this happens in conversation with others, sometimes just when I’m ruminating over a situation or conversation or event. It’s …. complicated.

Let’s start with the dictionary definition:

1: the act or state of expecting: ANTICIPATION in expectation of what would happen

2a: something expected not up to expectations; expectations for an economic recovery; b: basis for expecting : ASSURANCE they have every expectation of success; c: prospects of inheritance —usually used in plural.

3: the state of being expected

4: EXPECTANCY sense 2bb: EXPECTED VALUE

https://www.merriam-webster.com/dictionary/expectation

I think the bottom line is that an expectation means you were counting on something and when that something doesn’t happen, it’s difficult and it requires a reshuffling or reallocating of emotions or resources or something. These expectations can be very tangible (e.g., an inheritance) or more intangible (e.g., emotional support). I’ve not been able to parse out which is worse, each are difficult in their own ways.

In my experiences as a lawyer, there is a concept of relying on someone or something to one’s detriment. For example, a person expects that a contract will be signed and, in reliance on that expectation or promise or contract or handshake, that person turns down other contracts. If that original expected contract doesn’t come through, then the person has missed out on other contracts. Because of this negative outcome, the law sometimes allows for restitution.

Translating this into relational expectations, I think it could be said that if one relies on one person for something, then one doesn’t necessarily develop relationships with others who could fulfill those needs. And then what? The person who does need help or support or whatever, is required to scramble or lean on the people who are already supportive or just make do.

At the end of the day, I have come to realize that expectations are dangerous, especially the unspoken kind. How can any other person know what is in my head unless I tell them? The internal conflict arises for me when it feels too needy to express expectations. This is something that has pretty much always been a particular struggle for me personally. I’ve always been the helper, the caretaker, the strong one and, over time, I’ve developed a lot of habits that harken back to that time. Those habits don’t go away quickly, even after 3 years of dealing with MBC.

Additionally, I think sometimes expectations are based in often outdated cultural norms. For example, I grew up in the Midwest and the answer to anything is “bring a casserole” along with activating prayer chains and quilting circles, but no physical contact generally. When I set up a meal train to organize meals after a new friend here in Miami had a baby, I was shocked that very few people signed up. Explanation — not the cultural norm in Miami.

So, what to do with all of this?

I haven’t the foggiest … stay tuned for Part II!

Ordinary Love

One of the things we talk about regularly in our Stage IV cancer support groups is how often the media gets it wrong with the language that is used and when. We hear “She lost her battle” regularly and the commercials for various cancer medication are often nauseatingly upbeat with a lack of the miserable side effects shown. A big culprit of the toxic positivity that is often imposed on us is pinkwashing, but that’s a blog for another time.

Our experiences within in the breast cancer community are so varied and complex, but there are some themes threaded through all of our lives that are simply missed by popular culture and the organizations that purport to serve us. Don’t get me wrong, I do think that some companies get it right, but the vast majority gets it wrong.

With this in the back of my mind, I appreciated the movie Ordinary Love and its efforts to include both the experience of breast cancer patient and the caregiver. It doesn’t hurt that the actors are both exemplary in their ability to get inside the emotions of the experience on both sides. A picture is often worth a thousand words.

I think one of the things that most resonated with me was that the people depicted in the film are ordinary, not special. Breast cancer is the very definition of an equal opportunity disease, striking men and women of all ages, from all walks of life and varying underlying health. The movie showed that, the reactions and struggles with all the expected human foibles present.

Ordinary Love is well worth the watch, just have some tissues present.

Electronic Resources, Overview

I’ve often said that those of us in the breast cancer community are in the best position to know what would be helpful to the community. The men and women I’ve met in the last three years have more than impressed me with their creativity and commitment to helping others without asking anything in return. I’m sure there are amazing people in the larger community too, but I’ve never seen the numbers and focus before I was diagnosed with breast cancer.

One such person is Marianne Sarcich, my new friend. To help others, she has spent countless hours working on researching, verifying and collecting a list of all the electronic offerings for breast cancer patients. Rather than trying to charge for the fruits of her labors, she is sharing the information freely.

See what I mean? Amazing!

Here is the link to the information Marianne gathered: https://drive.google.com/file/d/1E2–omgHVd8Ec6EYw4So6FN9gRYEyWOk/view?usp=drivesdk.

Regular updates have already been provided and will be again as things change and develop. Check out the companies who are doing the best job at adjusting to the quarantine and give them some love!!

Stay safe everyone!!

Electronic Resources, LBBC

In this unprecedented time, many organizations are pivoting to provide the same or similar resources electronically. The organizations who are having to adjust range from government, to non-profits, to public health, to for profit companies. Frankly, I’ve been blown away and significantly impressed at how breast cancer organizations have been able to continue to do their vital work with some adjustments to accommodate social distancing.

One such organization is Living Beyond Breast Cancer (LBBC). I was privileged to participate in the Hear My Voice Advocacy program in 2019 and have been participating on the Advisory Committee for the 2020 Metastatic Conference, which will be conducted electronically on June 13th and 14th. Additionally, LBBC is continuing to provide grants to men and women in active treatment. In an effort to help even more, LBBC will hold their Reach and Raise fundraiser this weekend!!

Check out this link if you are interested in getting involved with Reach and Raise this weekend: https://facebook.com/events/s/virtual-living-beyond-breast-c/586039361942758/?ti=icl. If you are interested in giving money to support LBBC’s ability to give grants to men and women in active treatment for breast cancer, feel free to check out their website or drop me a message and I’ll hook you up.

Those to whom much has been given, have a responsibility to help as they can. Give and give generously!

Reblog: Fibromyalgia Awareness Day: Quality of life impact

I’m sharing this blog, that I didn’t write, about an illness that several dear friends deal with. Read on …

May 12th is Fibromyalgia Awareness Day. The day I talk about Fibromyalgia More than usual to spread awareness and reduce stigma. A brief history of …

Fibromyalgia Awareness Day: Quality of life impact

Statistics

I’m not a statistician and I struggled in the one statistics class I had to take in college. This is not about how to calculate or how to understand statistics as I’m so not the person to hand out that information. This post is to explore the uneasy relationship those of us with Stage IV metastatic breast cancer have with statistics.

When I was initially diagnosed, my doctor shared some statistics with me. I realize this is not everyone’s experience since some doctors are wary of scaring patients and legitimately, no one person’s life can be explained by a statistic. However, for Type A people like me, knowing how much time I have to plan is pretty significant. I turned to the known statistics to try to get a sense of how much time I really had left. My current medical oncologist isn’t a fan of looking to statistics to try to plan and so I’ve been left to muddle through the morass on my own.

Turns out, there are a lot of different perspectives and statistics drawn from different data sets out there. Makes it a little difficult when one is looking for data to rely upon to make decisions. Plus, I learned a few things about how statistics can be manipulated and that means I tend to look much more carefully at what others claim to be reliable statistics. I’ll never be a statistician; at the same time, I’ve learned a little too much about interpreting data and I’ve become even more skeptical of those that confidently state a statistic without support.

At the end of the day, I’ve discovered that no one really knows the answers to the questions that I would like to have answered.

And that’s really frustrating to a planner like me. We live in the chunks of time between each scan because that’s what we have to do. We wait to make decisions about traveling or activities until I know if the cancer is behaving itself. We all hold our breath when a scan comes and we wait to find out what our life will look like for the next few months.

This living in the increments of time between scans has been, frankly, awful for everyone involved. This captivity to information; a reliance on a broken system, is traumatic in ways that are hard to articulate. We are no longer free agents, able to make the decisions we need to for our family. When I want to do something new, one of the steps that has now become a necessity is to ask my doctor. I think I hate that the most. Don’t get me wrong, my doctor is great; at the same time, I don’t give away my decision-making authority easily.

And yet, that’s just one more thing that MBC has taken from me.

Back to those statistics … the one that scared me the most was that the median life expectancy for someone diagnosed with MBC is 2-3 years. The next one that scared me is that at diagnosis, each person has a 24% chance of living 5 years. Once a person living with MBC has passed these milestones, the likelihood of living longer starts to climb. The likelihood of becoming an outlier grows with each year lived past the diagnosis. There are obviously lots and lots of details that adjust one’s life expectancy, like age or subtype or disease load, so these numbers aren’t as reliable as one would hope.

Here’s another statistic that I do like: one study showed that people who have bone only mets like me live an average of ten (10) years after diagnosis. While this is nowhere near the amount of time I want to have with my kids, it’s better than 2-3 years, I suppose.

My conclusion is that statistics are only truly helpful in certain contexts. The statistics I described above are ones that I use often in my advocacy efforts because they are shocking and compelling. Applying those same statistics to real life are just more problematic. Putting the statistics in the right context makes them more palatable.