Missing Out

I’ve written before about the Fear of Missing out or “FOMO” as it pertains to parenting and the limitations of MBC that affects my ability to actively and physically participate in life with my children. Thanks to COVID-19 and the pandemic, we’re definitely drowning in family time right now. At the same time, the lack of traveling and interacting with others in the metastatic community has affected me in a different way.

When I was diagnosed with Stage IV metastatic breast cancer in 2017, my doctor told me that the average life expectancy I could expect was 2-3 years. In an instant, my life irrevocably changed and we have had to make decisions based on a timeline that was really really hard to get used to. I think the biggest change we made is that we don’t put anything off. We make plans to live life and then we do it. In the last two (2) years or so, I also dove into the metastatic community, engaging with other patients and traveling regularly to conferences. The friends I’ve made and the experiences I’ve had have truly been priceless, even through the regular deaths of precious souls taken way before their time.

Then COVID-19 happened.

For those of us whose life expectancy has been cruelly truncated by Metastatic Breast Cancer (MBC), the prohibition on traveling and gathering has eliminated some of the most important methods of maximizing the time we have left and has limited our ability to gather with friends whom we may never see again. Others who have more time in their lives to take a cruise or a vacation or just to be with family and friends will be able to do these things for years after the quarantining has ended.

When I travel to a conference or meet up with other friends who have MBC, we are acutely aware that the time we have with that person may be the last time we see them alive except for electronic communication. I can think of at least a dozen people who I hugged for the last time at a conference and then watched online while they declined and died before I could see them again. It’s one of those parts of the MBC experience that is hard to explain at times. Definitely something that healthy people don’t think about.

I’m sure the MBC community is not the only community who is feeling disproportionally affected and those perspectives are certainly valid. I think we will see the affects on the world for a long time, especially and particularly in mental health. The feeling of missing out and never being able to replace this time we’ve lost is weighing on me and I’ve heard others express something similar.

And so, what to do? How to remedy this?

I’ve found a few things that are helping me feel more connected to my community even when I can’t physically be with them.

  1. Writing letters. I used to exchange letters with my grandmothers regularly through college and law school. Getting back to the thoughtful and careful exchange of thoughts has been very worthwhile for me. A friend of mine set up a pen pal program too and that’s been fun. Plus I got to buy pretty stationary!!
  2. Electronic Learning Opportunities. I participated in the very first online course when I was in law school, I got my Master’s degree almost entirely online and I’ve been doing Continuing Legal Education (CLE) classes online for quite a while. All of that did not prepare me for having to do EVERYTHING online and I can’t say I’m a huge fan; at the same time, I’ve had the opportunity to help with the transition of certain conferences from in person to electronic. Applying creativity and careful planning/thought to the transition has occupied time and energy and that has helped.
  3. Expansion of Support Group Activities. I’m involved in local support groups as well as online support groups. In each of the groups I’m participating in, we have expanded the connection opportunities, including zoom and other q&a interactions. While not perfect, I think we are all learning the value of digital communication in a new way.
  4. Continue Making Plans. We may not be able to book a plane ticket or a resort or a conference right now, but we can still virtually travel to coveted destinations and plan for when the pandemic ends and traveling is available again.
  5. Make the Most of the Time we Have. Sometimes I think this is one of the most precious silver linings of a terminal diagnosis. I’m nearly always thinking in terms of now being all I have. Each holiday feels as though it will likely be my last. The benefit of this is that I’ve learned to make the most of now, the most of what we have right in front of us.

While I’d written most of this a few weeks ago, I would remiss if I did not add that we just completed the Living Beyond Breast Cancer 2020 Metastatic Breast Cancer conference entirely virtually. There were so many opportunities to connect, to chat, to see one another on the screen and it was more than lovely. As some people said, no lines to the bathroom is a major plus! Also, no traveling and worries about luggage and traveling with medication, etc.

And yet, as wonderful as it was and as amazing a job as all the staff and volunteers did, it was still a huge bummer not to see everyone in person. Some of us got together for an impromptu happy hour at the end, but it was still not enough.

It wasn’t enough. Our community is built on the community we create together. This is missing out.

What else? Tell me, what have you learned about making the most of now?

Experimentation Update, June 2020

As some of you are aware, I embarked upon an oncologist directed experiment of one (1) person (me) about three (3) months ago when we added Kisquali (a/k/a ribociclib, a CDK4/6 inhibitor) to targeted therapy, Piqray (a/k/a Alpelisib), along with Faslodex (a/k/a Fulvestrant) and a rather lengthy list of medications to address side effects and supplements, etc. If that sounds like a lot, it is. I’m still on the highest dose of both targeted therapies, which has been a lot on my body. However, we had to do something different since the PET three (3) months ago showed that all of my mets (and I have many many bone mets) were becoming significantly more metabolically active, a harbinger of progression to come. My doctor didn’t want to let go of Piqray as my second line of treatment because I have its target, the PIK3CA mutation.

Well, my first PET since starting this regimen was the 8th of June and the results are pretty freaking amazing. The report includes phrases like …

  • interval resolution
  • multiple lesions … most of which do not demonstrate … abnormal uptake
  • significant interval improvement
  • mild residual metabolically active metastatic disease
  • no evidence of new metastatic osseous lesions
  • no evidence of soft tissue metastatic disease

Frankly, three years into this experience with Stage IV metastatic breast cancer, this is the best scan I’ve ever had. Many of my last tests included phrases like “innumerable lesions” and “high risk for fracture” and “pathological fractures” and “compression fractures” and “increased metabolic activity” and “new metastatic lesions.” I watched for stability, at the measure of metabolic activity, the SUV values, to inch lower. Every report, I pored over, finding some measure of comfort in the phrasing and parsing out the meaning of each word.

This is NOT a good idea as different radiologists with different styles used different language and it drove me nuts trying to figure out if I should read between the lines. Please don’t do that to yourself, I would make myself a little crazy each time. My doc kept telling me to keep my wordsmithing out of the medical reports, that I wasn’t reading a legal brief.

Many doctors use the phrases No Evidence of Disease (NED) or, mostly for those of us with lots of bone mets that show some activity while dying and healing, No Evidence of Active Disease (NEAD). When I asked my doctor if I qualify for either of these labels, she told me not yet … and then added, but you are the closest you’ve ever been. That’s the first time she’s told me that. I could hear the broad grin in her voice, another first.

It has taken a lot to get here, a lot of blood, sweat and tears, not all of them mine. I haven’t been alone in getting to this point, it has taken a gigantic team of medical professionals, friends and family. This victory is theirs as much as mine and I know that I don’t always remember to acknowledge that. I would not be here outside of my village and you, my readers, are part of that village in your own unique way.

And yet.

We celebrate today, knowing that in a month, we could be back to progression and new lesions. Friends got good news this week and friends got very bad news this week. The rollercoaster of this experience is constantly teaching me that today is what we have, today is what we need to focus on and today is what matters.

When a loved one gets it wrong

The impetus for this post came from a rather difficult conversation in one of my breast cancer support groups recently. I’m not referring to any one particular person in this post and some of it isn’t even about me or my own experiences. This post is purely my own musings. At the same time, I’ve not met one person dealing with a difficult situation in their lives who have not shared how someone in their life they expected to support them, did not for one reason or another. I say this because this experience is not limited to breast cancer or a terminal diagnosis.

My mom was diagnosed with stage 0/1 breast cancer while I was a young professional, relatively newly divorced from my first husband and still figuring out what it meant to be a lawyer. In that experience, as I was trying to figure out what it meant to be a daughter to a breast cancer haver and then survivor, my role was mostly focused on the legal and financial issues. I fielded the frantic calls from my dad when the financial people tried to get him to write a $40,000.00 check so my mom could get chemo as she was getting settled into the chemo chair. I threatened her insurance company with whatever I could think of to get them to honor their contract when they inappropriately and illegally tried to deny her life saving treatment. Long story short, they paid her bills but only if I promised not to call them anymore. I happily agreed and abandoned the multiple lawsuits I was planning.

I didn’t know how to handle my mom’s illness and I more fully get that now.

Once my mom moved from patient with cancer to survivor, the emotional fallout and the trauma to her and the family became more pronounced. In hindsight, I mostly coped by burying myself in work and not dealing with the emotional aftermath. The one thing I did do was buy just about every pink soaked, bedazzled and fluffy thing I could find for her, especially if it had a pink ribbon on it.

My mom is the kindest, most nurturing person I know and she never said anything about whether those purchases helped her. Probably not. Looking back, I’m pretty sure that my behavior was much more about me than it was about her. It made me feel better to do something, anything. What is oddly out of character for me is that I didn’t spend any time confirming that funds from the sale of those items went to help breast cancer survivors or research or anything other than just lining the pockets of the people who sold them. I think that part of it was that I didn’t much care about that, only clumsily trying to show my mom how much I care about her, which is a whole heck of a lot.

Oh how times have changed.

Once I was diagnosed with breast cancer, I was the recipient of a variety of pink soaked contributions along with the t-shirts and slogans about being a warrior, fighter, etc., and, at first, that meant something to me. “Cancer picked the wrong bitch” is a particular favorite still. I confess I didn’t wear many of the gifts and I didn’t always know what to say because every slogan, every ribbon carries such ambiguous feelings for me. As I was trying to wrap my head around all of that fighting and winning and survivorship language, we learned I had actually been stage IV from the beginning. Once my day to day wasn’t just about staying alive through all of the treatments and surgeries, my world expanded into the metastatic breast cancer community.

And I got an education.

What I learned over and over was the sad truth about all that pink fluffy stuff, that usually buying it wasn’t helpful to patients or the breast cancer community. It was so very upsetting to learn that many many companies use breast cancer as a marketing technique to make more profit. Sure, there are some reputable companies that are doing the right thing but they are in the minority. I’ve spent a lot of time since my diagnosis interfacing with various companies, researching their connections/intentions, and calling out the ones who are getting it wrong.

What is less easy to deal with is when an ostensibly well meaning family member or loved one, despite all efforts to educate and share and rant, etc., still insists on labels that hurt, gifts that are about them or reacting with jealousy when you, the sick person, is receiving support.

I came across this meme recently and it resonated with me. When a family member or loved one gets it wrong, it hurts far more than a stranger or an acquaintance. When a family member or loved one ignores the affect of a terminal illness and the treatment and side effucks and behaves badly towards a vulnerable person, it bruises the soul and tears down protections dearly won.

And so, what to do? What can be done when you’ve done all you can and someone you love still behaves badly?

I certainly don’t have all the answers; at the same time, here are some ideas that resonate with me now that I’ve walked the path of family member of a person who is ill and being a terminal patient myself:

  1. Just like I got it wrong with my mom and didn’t do what was best for her, I suspect that many loved ones are acting out of their own pain and uncertainty. While it’s not easy, making the attempt to walk a few days in their shoes might help to see the situation a little differently. A cancer diagnosis does affect the whole family and despite what “should” happen, some family members just can’t see beyond their own perspective, their own pain, their own glimpses of mortality through your experience. It’s not right or good, it just is.
  2. Just like I was buried in my own concerns and had a difficult time taking on and feeling my mom’s diagnosis, I think sometimes a person who loves a person who is ill doesn’t have the capacity to handle the emotional part. While this can be insanely agonizing to bear as the person with the illness, this is about the loved one’s capacity, not the person who is ill. I’m aware that this is almost impossible to remember in the moment and giving grace while in pain and hurting is something I can’t do, yet. I’m hoping that will improve with some practice and I’ve been given quite a few opportunities to practice over the last three years.
  3. Denial is the first stage of grief and I know that some people who are ill and their families often cope by looking away. When the illness is invisible, it’s even easier to look away and behave as an ostrich does when danger approaches, burying their head in the sand. When someone is living with a terminal illness for years and years like some amazing unicorns in the metastatic community, others come to think it was much ado about nothing. As a person with an illness that requires me to stare down death every day, I get the seductive allure of denial and I confess that I have many ways of escaping from reality too; it’s just a lot harder to handle when someone you love does it when you need them in the valleys.
  4. History and the past of a relationship doesn’t just vanish when someone in a relationship is ill. Everyone carries baggage with them through life and sometimes it is legitimately impossible to lay that baggage aside no matter how dire the circumstances of the family member or loved one. Walking away from the possibility of forgiveness and reconciliation is tragic, especially when the loved one is terminal and the days are numbered to seek reconnection. Yet, the loved one or family member who makes that choice is the one who loses the most.
  5. Human capability is only so deep. Every person has their own capacity for looking at suffering, for entering into another’s suffering. As I learned and wrote about earlier in my post Entering In, it truly is a rare person who can outside of other people in the same boat.

This list certainly doesn’t cover everything. As an aside, I’m not sure any of this is relevant in a relationship where there is abuse or violence. Those issues are far more serious and anyone who is in an abusive relationship while dealing with a serious illness is free to contact me so I can connect you with resources.

At the end of the day, what I can say with any confidence is that we are all human. We are all dealing with far more than any other human can really understand. When expectations are violated, when you feel let down, when a loved one gets it wrong, it hurts and that hurt is valid. I have no solutions, I’m working through this myself. All I have figured out is that I have to take two steps back, not apply what I would have done in a particular situation and give grace upon grace upon grace.

It’s not easy and I get it wrong more often than not.

P.S. I’m not referring to any one particular person in this post except for myself and my mom where I have specifically said so. If anyone reading this post feels that I am talking to them or about them, you are probably wrong; at the same time, if you think so, maybe that will help you to think and respond differently in a similar situation. All anyone can ask another is that they make the effort to examine themselves. Namaste.

National Cancer Survivor’s Day

I started this post a little while ago and have been coming back to it over the last week or so trying to figure out what I want to say, what I feel about today and the purpose of today. If this post feels disjointed that’s because that’s the way I feel right now in the midst of all the racial turmoil and the pandemic in this country. I suppose this is my disclaimer if you find me scattered right now.

Let me first say that I don’t begrudge the men and women who have finished cancer treatment and are able to get back to their lives. I know that even though the formal treatment may be over, the experience and trauma of breast cancer stays with each person who has heard those words … “you have cancer.” If you are in this category, celebrate to your hearts content, use whatever colors make you happy and revel in this holiday. It is meant for you and you know what it feels like to survive.

For those of us living with terminal cancer, we have survived this long and I know that many embrace the label survivor with gusto. This holiday is for us too, to acknowledge what we’ve gone through and continue to go through every single day. If you are in this category, celebrate to your hearts content, use whatever colors make you happy and revel in this holiday. It is meant for you and you know what it feels like to face death every day and survive anyway.

For those of you who are newly diagnosed or still in the active treatment stage where you are facing surgeries and chemo and pain and vomiting and nausea and fatigue, this holiday is for you too. You have survived to this point. You may have other hurdles to cross and the treatment may seem interminable; at the same time, you made it to today. If you are in this category, celebrate to your hearts content, use whatever colors make you happy and revel in this holiday. It is meant for you and you know what it feels like to face getting up every day, going to treatment and surviving.

For those of you who have lost loved ones to cancer, I think this holiday is for you also. I know, it doesn’t seem like it, but hear me out. Your loved one did survive cancer. They lived with cancer. Their lives are more than cancer. While cancer may have murdered them, that does not define their lives, how they lived defines their lives.

Yesterday, we lost a wonderful woman to stage IV metastatic breast cancer. I say “we” because every loss in the metastatic community sends shockwaves through us all. Karin Petrocelli lived in Florida, as I do, and she was a force of nature. I spent two amazing Stampedes with her in Washington, DC, where we advocated with other Floridians for necessary law changes for metastatic patients. Florida usually has the largest group and we are loud and persistent and so much stronger together. Karin was a tireless fundraiser, hosting the SWFL Metsquerade in early 2020 for the third year in a row AFTER entering hospice.

The funds Karin raised wouldn’t and won’t help her since research takes 10-15 years on average to lead to medication that someone can actually take. Her efforts and contributions will be felt by so many who will never learn her name, never know her smile, never know who she was.

So, celebrate today, lift up those men and women who are survivors, surviving, and looking forward. Tomorrow, we need to get to work. Karin deserves that, my dear friend Emily Garnett who I miss every day deserves that, and all the amazing men and women we’ve lost to cancer, they all deserve every ounce of effort we can give to eradicate this disease that takes and takes and takes and takes.

We are all more than cancer.

Medical Update, ONJ

About three weeks ago, I started to feel pain in the lower left quadrant of my mouth, tooth #18 to be exact. I’m one of those weird people with more alkaline than acidic salvia and at age 41, I’ve still never had a cavity. (knock on wood). Braces, yes, twice, and I struggle with tarter development, but no cavities. I can’t take any credit for this since my husband points out regularly that I’m pretty lazy about caring for my teeth, something that has to change now.

Once I’d had pain for a few days and it kept getting worse, I scheduled an appointment with my dentist. He knows all about my metastatic breast cancer diagnosis and the X-rays showed that I still don’t have a cavity. I love my dentist, he’s a straight shooter and doesn’t have much of a poker face. Even with the mask on, I saw his eyes widen. He quickly told me that he knew what was going on but had literally never seen it before in real life, just in his training. I was referred to a few oral surgeons and he offered to write me a prescription for the pain; at the same time, he chided me a little since the pain I was and am feeling apparently is so far beyond the pain of a cavity that I should’ve known something else was going on. Just one more weird experience related to my pain tolerance.

After some phone calls and a little begging, with a few tears, I had an appointment fairly quickly with THE oral surgeon with significant expertise in the affects of bisphosphonates on the jaw bone. He confirmed my suspicions, I have osteonecrosis of the jaw (ONJ) in a fairly typical presentation in a very typical spot. For anyone who is super curious, here is a general overview of the diagnosis and some of the related issues/treatment. One distinction I’ve learned is that I have medication induced ONJ, which behaves differently and is often differently treated from ONJ arising from a different source.

My understanding of the situation as it pertains to me is this:

  1. Zometa, the bisphosphonate that I get monthly via an infusion, affects the death and replacement of cells, both healthy bone and cancer, in my bones. The result of Zometa’s interference in this chemical equation means that the cancer growth is inhibited and there a “sealing” or “coating” affect as well, which means that the cancer is trapped inside the bones and is unable to spread to my organs, something I’d like to keep as long as possible. I do know that the scientific explanation is much more complicated, but this is the best way I can explain this process in words that I understand.
  2. The jaw bone is something like ten (10) times more sensitive than any other bones in the body to this medication. I’ve had TMJ in the past and I believe that some of the migraines I’ve gotten at various times in my life has been related to jaw pain. All of the bones and systems are super close to each other in the head and referred pain is definitely something I’ve struggled with.
  3. Because of this sensitivity and the years of getting the medication monthly, a part of my jaw bone has died. Breaking down the actual word helps: osteo = bone and necrosis = death. Eeek, there’s something very very strange about knowing a part of your body that is supposed to be alive is dead inside your body. Weird Weird Weird.
  4. Once that part of the bone died, the gum covering that part of the bone died as well and is gone — bleh, I probably swallowed it, yuck. No blood flow to the bone means that there is no blood flow to the gum. Therefore, a gum graft to cover the bone that is open to the inside of my mouth won’t work because whatever is placed on top of the dead bone will die too.

I keep learning such strange things about cancer, cancer medication, and the side effucks. For now, the treatment for me for my ONJ is antibiotics. Several to start with and then I’ll be on a low dose antibiotic for so long as I have a jaw bone. Thinking that’s a pretty necessary bone, so I’ll be taking it for a while. I’ll be following up with my fancy expert doctor regularly and we will likely have to adjust my Zometa treatment but it appears that I can stay on it, albeit perhaps at longer intervals, probably moving from monthly to quarterly.

Before I close this post, I wanted to give you all a glimpse into the experiences of living with this disease that I don’t always write about. When I sit down to write blog posts, it’s usually in the aftermath of an experience once I’ve had the chance to figure out what I’m going to do about it and when a plan is in place. That isn’t always reflective of my initial reaction and I wonder sometimes if I’m giving people a false sense of the experience or how I’m dealing with it.

When I saw the exposed bone inside my mouth a few weeks ago, I knew what it was right away. Yes, I realize I’m not a doctor and my self-diagnosis doesn’t mean much of anything; at the same time, I’m fairly well informed about the medication I’m on and the side effucks to look for. I didn’t do anything other than deal with the pain for a few days while I dealt with the emotions that came along with it.

More than anything else in the last three years, finding out that my jaw bone was likely dying felt like imminent death to me.

Why?

This may seem convoluted, but having to slow down or stop taking Zometa felt to me as though the mets would immediately leave my bones, take up residence in a necessary organ for life, and kill me quickly. Too many of my friends die each day for me not to think the worse possible outcome when cancer takes over a necessary organ. The intense pain I’ve been dealing with, which has been steadily increasing did not help, the fact that I’ve had to be on oxy to handle the pain when I’d been able to wean myself off, the fact that the jaw pain caused multiple intense migraines that lasted for several days, and the fact that I’ve struggled to sleep as a result of all of those things, well, it is not a recipe for thinking clearly/rationally.

Once I’d had some time to sit with these feelings, do my research and get to an expert, I’ve been able to be more logical, more practical, more of a realist and deal with the logistics of treatment and visits and medication and adjustments.

Living with a terminal disease that loves to throw curveballs at all times is not easy, it’s messy and it’s emotional and it’s tragic in so many ways. That is not to say that I don’t have hope, that I don’t use my energy to find better and best ways of treating the disease and the consequences of that treatment. It’s just that the wallowing, the dark places, and the anxiety is also part of living with a terminal disease. Sometimes it’s more wallowing than progress; other times, the opposite.

At the end of the day, there is nothing special about walking this road. I am human and dealing with pain and nausea and pain and vomiting and more pain wears on me. Thinking that I’ve reached a plateau and I can breathe a little only leaves me open to the disappointment of being thrust back into the hopelessness and helplessness of a new life threatening issue that must be addressed. Yes, I caught my ONJ early and we’re going to treat it, but ONJ is something that could kill me if not addressed. I’m not sure how many more potentially terminal diagnosis one body can handle.

For today, I know that we have the rough outlines of a plan, with more details to be fleshed out, I have medication that will help my pain, and I believe that I have the right team members in place. Tomorrow, it may be an entirely different situation. I’m learning to be more comfortable with this ever changing life with MBC and I can say that I will die of this, but not today.

Fathers and Sons, Mothers and Daughters

In this time of COVID-19, I’ve had the chance to watch new shows on Netflix and rewatch favorites I’ve already watched. One such series that I spent time rewatching recently was Game of Thrones (GOT). Much of the hype around GOT happened while I was busy juggling motherhood and a busy law practice, so I wasn’t paying very close attention. Now, I can. As an aside, I read the books some years ago and the books are still by far my favorites over the show. But, I digress …

One of the themes I’ve noticed coming through loud and clear in GOT are all the examples of how parents affect their children, good and bad. In the overwhelmingly patriarchal society depicted in the show, it at first seems that fathers have the most affect on their children, but as I watched closer, the role of mothers and mother figures, while more subtle, can often be even more important, especially when it is absent. And that influence is absent a lot, seemingly more often than not.

While I do realize that GOT is a fantasy, one of the marks of the genius of the author is that the characters closely mirror real life in many ways. The role of the parent in shaping the outer and inner world of their children has been a consistent theme in my life and one I’ve seen in others around me, particularly my five (5) siblings and my husband. It’s also something my husband and I talk about regularly in relation to our two (2) boys. Knowing that my role in their lives may be much shorter than we hope has created an increased desire to understand and be intentional about my mark on their lives before my death affects them.

One book I read last year was The Blessing by Gary Smalley and John Trent. The Blessing explains the five (5) elements of a traditional blessing rooted in the culture and teachings of the Old Testament. In the Jewish culture described in the Old Testament, suggests the author, these elements were an important and well-understood part of family life. It reminds me of the formal and measured way the Ned Stark character in GOT relates to his children, a theme that is seen clearly through the entire show, long after he lost his head. I’ve done my best to incorporate some of these elements in my relationship with my boys and in the letters I’m writing to leave behind for them to open.

The five elements of the blessing described by Smalley and Trent are:

  1. meaningful touch
  2. a spoken message of love and acceptance
  3. attaching “high value” to the person being blessed
  4. picturing a special future for that person
  5. an active commitment to fulfill the blessing

I’m not a touch-feely person generally and typically keep my hands to myself; however, I’ve noticed that I instinctively practice meaningful touch with my boys and also random other children. Before you start thinking bad thoughts (you know you were going there), I’m talking about a gentle touch on the head or the shoulder or arm to show love or approval or celebration. I’ve also found that getting someone’s attention with a gentle touch is much preferable than shouting when possible. Living in this strange time of COVID and touching restrictions has reminded me how important a meaningful touch can be, especially with children.

I also struggle at times with the spoken message. I’m an introvert and my internal world is my safe place. Taking the time and focusing on remembering to speak messages of love and acceptance has been a discipline that I’ve had to learn over time. I’ve noticed that after I’ve spent some time writing messages of love and acceptance for my boys to have later, the words come easier to me. We still co-sleep with the boys, so those precious moments of snuggling and whispering right before bed are the perfect time to remind them how much they are loved.

These steps can be applied to any relationship, not just the ones between parents and children; at the same time, I do think that they are at their most powerful in a mentoring or parenting or caretaking relationship. It is the person who is older and wiser who the mentee or child is looking to for approval and these steps provide a powerful road map to be able to do so.

Whatever the specifics, the powerful role of Fathers in relation to their sons along with their daughters and Mothers in relation to their daughters and, of course, their sons, cannot be overstated. It is an awe-inspiring position and one that should be undertaken with careful thought and measured action.

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 when something happens (or doesn’t happen) 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!!