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Creating Lasting Memories

Ever since I knew that I have a terminal illness, I’ve been much more intentional about creating lasting memories with my boys.  They are currently five (5) and three (3), so I am quite well aware that their actual memories of me may not be all that vivid if my life expectancy follows the median of those with my disease (2-3 years is the median life expectancy).  One of the major ways I make sure that I will be visible in my boys’ memories is to take a lot of pictures.

Life isn’t perfect and I am often not happy about the way that I look in the pictures.  That used to mean that I didn’t post pictures or even take them and when I did, I’d carefully ensure that only the best were displayed.  Now, I take pictures all the time and I post and share pictures quite a bit.  I’m not at all narcissistic, I am intentionally making a record of the time that I have with my boys for them, for their future.  They will be able to look back and see all of the times we’ve had together.

When my dear friend, Jennifer Pace, posted information about an up and coming non-profit that schedules photo sessions for those of us with metastatic breast cancer, I jumped at the opportunity.  The photo session was nothing less than amazing and the pictures that came out of it are priceless.

I’ll post more on Facebook and all of the pictures, but I’ve tagged one of my favorites in this blog post.  Check out Joe Leone Photography and like 13th Hour on social media.  Joe and his sweet wife are traveling around Florida capturing poignant memories that cannot be replaced.

ATM Mutation (Originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women. A version of this post was originally published in 2018 in the Genetics edition of Wildfire.

When I was first diagnosed with breast cancer, my breast surgeon tested for the BRCA1 and BRCA2 genetic mutations only.  When that test came back negative for both, I really thought I was in the clear and my breast cancer was just a product of cells going haywire and nothing I could pass on to my two boys, then four (4) and two (2). Wow, was I wrong.

Only a few months later, we found out that despite having clear margins in my surgery and my sentinel nodes testing negative, I had actually been Stage IV since the beginning (a/k/a de novo).  With that diagnosis, my medical oncologist decided to test for the whole panel of genetic mutations, more than 40.  I wondered briefly why my breast surgeon hadn’t done that but went along. When the results came in, I discovered that I was positive for the ATM mutation.  After the inevitable jokes about getting money from the ATM, we settled down to research and share the information with the family.

As my family has gotten tested, we discovered that the ATM mutation came from my mother’s side (she is a breast cancer survivor and was tested over 15 years ago for BRCA only, which was negative).  I’m the eldest of six (6) children and I’ve cousins and aunts and uncles—there are a lot of us to test and not everyone is super excited to find out.  Understandable.

The ATM mutation is presently linked to a moderate risk of breast cancer (tell that to the crazy cancer cells that decided to mutate and spread everywhere in my body), a low risk of pancreatic cancer (1% more than the general population) and, most recently, a risk for prostate and ovarian cancer, which is still not quantified.  There’s actually more prostate cancer than breast cancer on my mom’s side of the family, which is why we weren’t surprised when the new guidelines came out with prostate included in 2018.  The other interesting phenomenon is that the cancer appears to be getting more aggressive with each generation.

When I first researched the ATM mutation, I was surprised to discover how little there is available to read.  The genetic counselor my husband and I met with verified that it is a relatively newly discovered mutation and there isn’t much available about it yet.  My sister’s genetic counselor referred to it as an “up and coming” gene.  That language is rather astonishing and we’ve joked about being more trendy than we realized – yes, humor is a good coping mechanism, even a bit of dark humor.

One note about genetic counselors — at last count, amongst the many members of my family scattered about the country, we’ve encountered, as a family, no less than ten (10) genetic counselors. The variety among the advice we’ve all received has been astonishing. There does seem to be some differences based on geography and whether the counselors are in an academic institution; however, it is important to note that this piece of our families’ journey is as much about art as it is about science.

Despite the fact that men can get breast cancer, it is currently believed that if I pass along this mutation to my boys, they won’t have a higher risk of breast cancer; however, they would need to be screened earlier for prostate cancer.  I am thankful that the testing for prostate cancer is much more precise than for breast cancer and that treatment is typically very effective.  You see, this experience with breast cancer and genetic issues has caused me to be thankful for the oddest things.  Yet, there it is.  I AM thankful that my children will be better protected than I was.

It is hard to describe my feelings about the possibility of passing along genes to my children that could kill them.  My husband and I struggled with infertility and I had to go through a lot of needles and tests and treatments to get pregnant both times.  I struggled with maintaining breastfeeding with my eldest while we were getting pregnant with our second son because of all the medication I had to take to get pregnant.  Our children were and are wanted and deeply precious to both my husband and I.

Knowing that I may give them something so deeply embedded in their DNA that is akin to a ticking bomb terrifies me.  Plus, it is unethical for children to undergo genetic testing for something that is an adult issue.  As a parent, I have struggled with this because I want to KNOW if I’ve passed something on to them.  I want to be able to tell them that they don’t have to worry if they test negative. I want to be able to remove that worry from my list of things that I stress about daily.

But, we can’t.

Since my children are so young, discussing how I got cancer or why or any of those deeper discussions are simply not appropriate yet.  They don’t understand anything beyond basic principles and we are careful how much we share with them.  Sadly, with the life expectancy I face, I will probably never be able to have those discussions with them.

The best I can do is to focus on gathering information for them and leave them the information that they need in order to be empowered at the right time.  Like the BRCA gene, so much more will be discovered, maybe not within my lifetime, but certainly within theirs.  Knowledge truly is power and with screening and early detection, this risk may not end their lives well before a “normal” or “natural” life expectancy as it will mine. If my grandchildren include girls, they may not be so lucky.

I am thankful that I have information that will help me prepare my children and I certainly do not wish that I’d never brought them into the world; however, I regret that I’ve given them something that may cause them pain.  As a parent, I desire only love and good things for my boys.  I am hopeful that they will use the information I will leave for them wisely.

A quick note for anyone at the beginning of their breast cancer treatment/diagnosis — even if it isn’t offered, ASK for the full panel. You need to know more than just BRCA1 or BRCA2. Get the entire panel done at the beginning. I wish I had.

Feeling Fragile

Most days, I have sufficient energy to keep up with the boys, to attend my doctor’s appointments and to do the things that need to get done, to do the laundry and organize homework. Most days. I’m not at my former level of energy, but with judicious rest and a LOT of help, including the pharmaceutical and natural kinds, what needs to get done each day, gets done. Adjusting my expectations to what I can actually do without having to recover in bed for a day or two is something that is still an ongoing project. There are days that I forget where we are and why. Other days, it’s all I think about.

It’s hard to describe how odd it feels to get used to a routine, a “normal” that isn’t really all that normal. I’m thankful that my boys don’t seem to remember much about what our lives looked like before my diagnosis. They aren’t comparing, they just want their mama. Or “mom” as my youngest is now calling me.

I compare.

I compare myself now to myself before. Some days the former seems better, some days the latter.

Recently, after a pretty amazing Spring Break with my kiddos and some of my siblings and nieces, we came home. While Elliot and I were unpacking, I fell down. I’ve fallen a few times in my adult life (once while pregnant) and before cancer, I’d just gotten up and back into the routine of my day. This time, it was entirely different.

I was scared. Really freaking scared.

I scraped and banged up my left ankle and jarred my left knee. My left leg is generally and overall a complete mess. The amount of pain I was feeling made me think that perhaps I’d broken something or at least pulled or stretched something. After the fall, I called my doctor’s office and they told me to come, no need for an appointment.

This is who I am now. The person who calls her doctor and they say come now. The person who falls down at the age of 40 and actually thinks that a bone might have cracked because of the amount of pain said fall creates.

WHAT?!?

Part of my brain was halfway convinced that there was a mistake, that I should just ignore the pain and swelling and bruising. The rest of my brain knew that it was serious enough to call the doctor.

So, we went. Since it was still Spring Break, I showed up with both boys in tow until Elliot could join us. The nurses and doctors joked that I’d brought the whole team to help. Neither of the boys are freaked out by doctors or hospitals any longer since they come with me at times and they know I go regularly. A silver lining, maybe?

After an examination and xrays to be sure, my doctors told me that I had not broken anything (thank God) but that I had sprained ligaments in both my left knee and my left ankle. Since ligaments don’t have blood supply like muscles, they heal much slower. Since my tendons are already swollen all the time, thanks to the Letrozole I take daily to suppress any remaining estrogen in my body, I have more than the usual inflammation in my joints all the time.

The remedy–RICE. RICE stands for Rest Ice Compression and Elevation. Likely, for months.

MONTHS

Ligaments apparently heal very very very very slowly.

The good thing is that only specific movements tend to cause pain. Walking is actually not so bad, it’s stairs or sideways movements that cause me to see stars, to consider blacking out or throwing up. So very thankful for the chair lifts in our three story condo that, while moving a bit slowly, allow me to avoid walking up or down the flights of stairs at home.

This is my life now. I fall down and face adjustments to my daily routine for months.

I’ve been that fragile for probably years now.

Yet, the feeling of fragility hitting me squarely in the face is disconcerting. No, that’s not big enough, it’s overwhelming. Actually, it’s freaking awful. It’s a slap in the face and an unexpected bucket of water upended over my head. No one likes to have their mortality, their fragility to smack them in the face or their left leg, to be more precise.

Don’t mind me, just resting, icing, elevating and compressing my left leg today and feeling fragile.

Discharging Student Loans

Like millions of Americans, when I went to college, I had to take out loans.  My loans from undergrad were tiny, like less than $2,000.00 and I paid them off by working multiple jobs each summer and breaks.  However, law school was a very different story.  I still worked during the school year and worked more than one job during the summer, but I couldn’t keep up and carrying multiple jobs while taking law school classes was a bit more than I could handle all three years.  So, I graduated with a bit of debt.

Without knowing that I was incredibly blessed to be graduating from law school in 2002, I consolidated my federal student loans through one of the government programs for a very small interest rate (I think less than 3%) and then I had guaranteed payments for 30 years.  I was a little astonished that they would give me a consolidation loan as long as a mortgage, but I was happy with the level payment.

Over the years since I graduated, we’ve had the opportunity to pay more than that level payment I’d locked in or even to consolidate the student loans further into HELOCs or other debt, but that low interest rate deterred us from making that decision.

When I found out that I have a terminal illness in 2017, things changed. My disability income is helpful, but nowhere close to what I was making when I was running a law firm, so I started looking for options.  When someone posted a link in one of my support groups (https://studentaid.ed.gov/sa/repay-loans/forgiveness-cancellation) about discharging the debt for good, I was intrigued.

The process was pretty simple and took some time, but I got the letter after a few months acknowledging that my students loans are discharged. There are some caveats, like if I take out another educational government loan within the next three (3) years, the balance will become due again and I’m pretty sure I’ll be getting a 1099 at some point that will create a tax liability, but I’m still glad I did it.  Not only do we not have that monthly payment (albeit small) but it is one less thing my sweet husband will have to worry about paying through my estate when I pass.  I’m also happy that we never expended assets to pay it off while I was still working because those assets will now be there for my boys.

Terminal Cancer changes everything, but sometimes there is a silver lining, sometimes that diagnosis can be used for some good. I’m just happy to have found some!!

Hear My Voice Class 2019 @ Living Beyond Breast Cancer, some thoughts

Philadelphia is cold!!

It’s also a bit gloomy and the air is crisp and cool.

This Florida gal is freaking chilly.

Oooh, ships!!

Those were some of my internal thoughts upon landing in Philadelphia on Thursday afternoon. In light of the fact that I sprained my left knee AND ankle recently after a fall, I signed up for a wheelchair escort at the airport. I think I’m ALWAYS going to sign up for this–I got to go to the front of the line at security and a cheerful tour of the airport’s terminals as a bonus! A few funny looks since I know, I don’t look that sick, but no comments. I was ready to address any comments, though, and to educate as I could about the reality of living with Stage IV Metastatic Breast cancer. The only people I had the chance to talk with were the gate agents and the actual transporters. I suppose that will have to do.

Thursday: We had some time for sightseeing since the hotel is located a few blocks from some significant landmarks of American history. I wandered for a bit with some new friends and took pictures of the famous bell and other historical things. Honestly, the blooming cherry blossoms were the highlight for me. We lived near DC for a time when I was a child and I still remember the cherry blossoms blooming every Spring. Then, our first event of the weekend, the Hear My Voice class of 2019 welcome dinner. We got to hear from our mentors (graduates of previous classes), discuss some goals and fears and then we were released for the evening. I did see that some of our compatriots continued the party with some cocktails; my roomie and I went to bed!! Shout out to the LBBC staff who made the room assignments, you matched us up well.

Friday: Today was full of fellowship and training and laughter, some tears, and really great information. The Hear My Voice (HMV) class of 2019 is a diverse group of women from all over, all of us with varied life experiences and ages and from all over the country. Some of the statistics we discussed today were about us–more than half of the group of women assembled by LBBC were diagnosed de novo metastatic, meaning that we were Stage IV from the beginning; our ages range from mid-30s to the venerable 74 (our more experienced members had great insights and one is still on Ibrance after participating in the original trial!!). The resources and depth of support available to us through LBBC will jump start our advocacy efforts for the next nine (9) months and beyond. To me, one of the best parts of the training is that we’re organized into groups with a mentor, someone who has been not only through the HMV program but have also continued that advocacy beyond the requirements. We ended the day with a dinner with the newly arrived participants in the conference, which officially starts tomorrow along with some art therapy and blending our own essential oils. Can’t wait to use the energizing blend I made!

Saturday: The medical part of the conference started today. The doctors who spoke today gave us a good blend of the technical aspects of their work along with the way forward. The speaker at the opening session actually said during her opening spiel that she considers Stage IV metastatic breast cancer to be chronic. What the actual fuck?!? She went on to say that she apologized in advance if she offended anyone. Perhaps she had an inkling of the ripple of offense that spread through the audience.

In my own humble opinion, since chronic conditions mean that the person with the condition still live a normal life expectancy while managing their disease. Since the median life expectancy of those of us diagnosed with Stage IV metastatic breast cancer is still 2-3 years, that’s definitely not a “normal” life expectancy. I read a recent study that said those of us with bone only Mets can look at a ten (10) year life expectancy.

THAT MEANS I AM LOOKING AT EIGHT (8) MORE YEARS. EIGHT. That’s not a normal life expectancy for someone who just turned 40.

Metastatic Breast Cancer is NOT CHRONIC.

Ok, I feel a little better after including those capitalized words.

After an emotional day of learning and meeting other stage IV metastatic breast cancer patients, I participated in the second Die In since I’ve been diagnosed. The Die In concept and METup as an organization was born here, at an LBBC conference. The founders of METup were graduates of the same program I am here to complete. I’ve never felt as close to understanding the focus and the conclusions made by the founders of METup as I have this weekend. The experience this time was very different from my first Die in, but it was no less powerful.

After the Die in, I had the privilege of attending a screening of “Love Always, Mom,” a documentary made by a previous graduate of the Hear My Voice program about her journey to be a parent through surrogacy after living with Stage IV Metastatic Breast Cancer. I cried nearly the whole time. It was powerful. It was heartbreaking. It was perfect. I’m already plotting how we might be able to bring a screening to Miami!!

Through 2019, the movie will be available at private screenings and then I hear that it may be streaming through Amazon soon. You can be sure I’ll be sharing information about it as soon as I hear more!!

Sunday: It’s the last day of the conference. The morning was taken up with the logistics of what we’re doing next and how to accomplish it. My head and my heart are entirely full. We were asked today to use one word to describe how we felt about the conference and the Hear My Voice training. My word was “exhausted.” That’s not a dig or a knock on the weekend or the training, it’s just that being around so many people and being “on” for an entire weekend is hard for this introvert.

I’m extremely thankful to all of the staff at LBBC who participated in making the training successful and the CEO of Triage Cancer, Joanna Morales, for doing an amazing job of facilitating the training. Becky, in particular, worked very hard to accommodate my request for raw vegan food and I know that wasn’t easy!

Overall, I know that this weekend and the training has only enhanced the advocacy efforts I’ve started and also helped me focus on what is the most important efforts to focus on. I can’t be all things to all people. I’m not someone who will be palatable or approachable to everyone. I’m really ok with that. My strengths and weaknesses are different than so many others. I know that one of my strengths is that I’m not afraid to speak up, even if I’m not 100% correct. That may offend some people, despite my good intentions. I’m actually really ok with that because that is being true to who I am and the skills I’ve obtained in my life and work.

Now to head home to the warmth of Florida and hug my guys!

Talking to children about Cancer (or any other terminal illness)

This is a topic that has haunted me since I heard in 2017 that not only did I have breast cancer, but that I’m incurable.  Having a terminal illness puts many things into perspective; however, the diagnosis does not come with a road map.  Rather like parenting … I remember that horrible feeling of astonishment and being overwhelmed when we were permitted to take our newborn baby home from the hospital, knowing nothing!

That feeling of free falling without a parachute or plan has become a bit familiar to my husband and I when it comes to parenting.   We’ve learned to trust our guts, to do research and talk to whomever will talk to us, but then we’ve gotten good at making a decision that seems best for our family and not looking back.  This is a function of how we both do life and it has worked well for us.

So, when we were faced with a terminal diagnosis and the quandary of what to tell and to whom, we have pretty much applied our tried and true method.  At first, we were extremely reticent and didn’t say much to anyone and we’ve worked our way into what works for us.  We’re still refining that process, but here’s a few things we’ve learned along the way about talking to the boys …

  1. Be Honest.  We haven’t hidden from the boys that I’m sick.  We’ve had to talk to them about being gentle and not running away from me since I can’t move very quickly.  The boys know something is going on and we didn’t want to hide things from them. Certainly we haven’t told them everything, but they know enough to know that if I’m having a bad day and I can’t be active with them, it’s not their fault.
  2. Be Genuine.  The boys are aware that I have limitations and I explain them as best I can to them.  After I had leg surgery, I was in a wheelchair, then I used a walker and then a cane.  I couldn’t climb stairs for a while either.  My eldest still talks about how the doctors needed to “fix my run” so that I could play with him.  He understands my limitations in terms of how that affects him, absolutely developmentally normal.
  3. Embrace Fun.  When I knew that I was going to lose my hair, I’d read that it would be best to shave the hair off when my scalp started hurting.  Since all the little hairs were also incredibly annoying as they fell out and got everywhere, it was a relief to get rid of it.  We told the boys that I was going to shave my head and they participated in the exercise.  Both my husband and my dad also shaved their heads.  Since it was hot and my wigs were itchy, I simply went bald.  The boys had a great time rubbing my head and then my stubble as the hair grew back.
  4. Be Open. Every time I go into the hospital and can’t come home for a few days, I know it worries the boys.  They are too young to talk about their fears, so we try to name what we can think of and speak to them.  We particularly like the “feeling buddies” from Conscious Discipline and would encourage anyone wanting to talk to their children about feelings to check it out.

The boys are so young right now that it is hard to imagine having more in depth conversations with them.  We will keep going at this the best way we know how, by researching, being present with the boys, and continuing to explore how best to support them through this amazing life together as a family, even with the storm cloud of a terminal illness hanging over our heads.

April Fools?

Today is the day that people play tricks on one another. Mostly in good fun. I have fond memories of April Fools jokes because my mother’s best friend from college used to live with us when I was a kid and she took this day very seriously. As a kid, green milk or corn flakes in the bed or Saran Wrap on the toilet was super funny and we didn’t have to clean up the mess.

As an adult, I know that the jokes people play can have a sharp edge to them. Pretend engagement posts can really hurt those people who are craving that one person to love them forever. Pretend pregnancy announcements can devastate those people who struggle with infertility for any reason. At one time, I probably would have thought both of those things were entertaining, but hopefully with age comes a bit of wisdom.

I started wondering/daydreaming this morning about what if the whole past two years was a mistake, a joke, and maybe I didn’t actually have terminal cancer. I was rewatching, randomly, an old Grey’s Anatomy episode where a doctor was purposefully misdiagnosing women with breast cancer and treating them with chemo for the money. Clearly that entered my subconscious.

It can be seductive, daydreaming about an alternative reality where the worst thing in the world didn’t happen and life had continued along the same trajectory we were on when those fateful words were spoken. I can’t say that I’ve been sucked down that path, my way of tuning out the noise of a terminal illness is to read science fiction and binge watch weird shows on Netflix or Hulu. Diving into someone else’s trauma or dream of an alternative universe can be weirdly satisfying.

It isn’t an elaborate April Fools joke.

I actually have a terminal diagnosis.

The median life expectancy for someone like me is 2-3 years.

It’s been 2 years and a part of my brain is always consumed with when the other shoe will drop and a result of a scan will plunge us back into the trauma of living intensely with cancer treatments and the uncertainty of my life expectancy. The rest of my brain is focused on what is happening with the boys and if they have shoes and when they need a haircut and obsessing over whether they are reading or pooping in the potty; in other words, the minutiae of life.

Living with two competing or alternative realities is often called ambiguity. I get that most of the world lives with ambiguity and I suppose I’ve had some experience with it, but let me be clear. I freaking hate ambiguity. It sucks. There is a very good reason most people who have or have had cancer struggle with their mental health. It’s heavy and it’s hard and no person is equipped to handle that alone.

So, this April Fools Day, take a moment to check on your friend. Your friend who desperately wants to be a wife, a husband, a mom, a dad, a grandparent, a healthy person, a whatever. Don’t pretend that your life is something else. Reach out and hug someone who might be struggling or someone who doesn’t appear to be struggling, or is the last person you think might be struggling.

The truth is, everyone has something that is hard. Everyone has something that is weighing on them. It might not be the weight of a terminal illness or a family member with a terminal illness or someone who had died, but we are all frail and all in need of simple human kindness, a touch, a hug, a emoji.

This is mine to you–whatever you are facing today, there is hope, there is help, there are friends, the sun came up today and you are loved.

Communication

Back when I was a practicing lawyer and I had my own firm (not that long ago, but it is starting to feel as if it was a million years ago), I had a bunch of rules about communication for myself and for my employees.  Since my practice was mostly focused on Family Law (divorces, child support, modifications, paternity, etc.), we walked with clients through probably the most difficult periods of their life.  Not unlike going through cancer.

Anyway, my biggest rule about communication is that if a client had to call us to find out what was going on, then we had failed that client.  Failed to keep the client in the loop, failed to anticipate the next steps of the case, and failed to ensure that the client knew without a shadow of a doubt that we were on top of things in their case.  Hearing things from us first rather than the other party to the case or a witness was key in my mind to keep the relationship between us and the client healthy.

Now that I’m a professional patient, I experience the communication between a professional and consumer from the other side and I’m more convinced than ever that I was on to something.  I cannot count the amount of times that I have sat and sat and sat waiting for results of a test.  The worst is having a scan or test on a Friday because of how much longer you have to wait.  On the flip side, hearing something about a test or scan right away usually means it’s bad news.

The bottom line is that the relationship between doctor and patient is not unlike the relationship between attorney and client.  There is the same imbalance of power, of knowledge and the same dependence on that superior knowledge.  Not unlike a client, a patient often uses the internet or other people to gather information and try to participate in a different way.  Unlike an attorney, doctors don’t seem to be as concerned about patients going elsewhere or that staff do not represent them well.

I am sure that every doctors office I have has a note down about me being a difficult patient.  I am always on time and I always follow the doctor’s instructions; I do also expect to be seen timely (or there be a good reason why I’m not) and that I receive return calls.  I fill out every single survey I receive and I give feedback (most often instant) for good and bad things.  I speak up and I advocate for myself.  This has earned me many a snarky look or comment from support staff, who are the most frequent to be falling down on the job with this.

It’s easy to focus on the things that go wrong, the calls that don’t get returned, the test results that are delivered late or rushed.  It’s easy to focus on those things because frankly, I hold my breath until I know.  I hold my breath until I know whether I’m going to live a bit longer, if the cancer is at bay, if the weird symptoms mean anything, if the new lump in my arm or leg is more or a different cancer.   I hold my breath and the waiting seems to last forever, every single time.

I don’t always know if the person on the other end of the line or sitting across the desk is having a bad day or had received horrible news of their own.  I do my best to take two steps back when I get an odd or unexpected reaction; however, sometimes I am just not able to.  Maybe if things weren’t so raw, weren’t so immediate, weren’t so heavy, I could empathize with the other person.  Maybe.  I’m not a patient person generally and that comes through most clearly when I’m stressed.  Cancer and the treatment of cancer is inordinately stressful.

Everything about my cancer treatment stresses me out.  I’m usually good at compartmentalizing in the moment.  I’m good at acting like everything is fine, usually.  I also get angry.  I get angry when I’ve held my breath for 3 months and then I’m asked to wait another day or week.  No one knows how difficult it is to get through those three (3) months and then to be told to wait longer is just untenable.

I get that most of the people I encounter along the way during my treatment are just there to do their job.  Punch the clock and get home to their families.  What they don’t understand (and what my staff at my law firm also didn’t always understand) is that this medical stuff is my life.  I will be in treatment for the rest of my life, so for the love of God, don’t make me wait another day or week or month or moment to find out if my cancer is behaving itself.