Cancer with young children

The tragedy of breast cancer is that it is really common.  It affects many women, many of them relatively young, like me.  It seems everyone knows someone with breast cancer.  This is a major reason why breast cancer gets so much funding and why it seems (to me at least) that sometimes breast cancer gets over-hyped as a fear of women.  Women die every day in accidents, from other types of cancer, from heart disease, etc. but we don’t really glorify those problems like we do breast cancer.  In addition to the high frequency of diagnosis, many times breast cancer patients are mothers with young children.  This adds an additional element of sadness to the situation.  I think the most common question I get asked is how the children are doing.  The truth is, as far as my situation and my children are concerned, they haven’t really been affected by the diagnosis to the extent we would think they would be.  For example, when they were five and two I underwent chemotherapy and lost my hair.  I thought it would be this traumatic event, especially for my youngest who touched my long hair a lot.  I actually worried they might become a little afraid of me.  They really didn’t seem phased at all.  My oldest, who was five at the time, does remember me losing my hair and doesn’t want me to lose it again, but I don’t think he was really upset by it.  I’m sure skeptics are thinking, “Of course, Katie, you’re just seeing what you want to see and downplaying their feelings so you feel better”.  I really don’t think that’s the case.  I think kids are just more resilient than we give them credit for.  They understand I have cancer, it’s just kind of a part of life for them.

Cancer has changed my relationship with my children.  I’ve definitely fallen off the parenting wagon a little bit.  I say this with caution, because I am a little concerned it will be used against our family at some point (I can see it already, “Well, those kids never had a chance with their sickly mother”) and for the most part I feel like I’m still a functional parent.  Now I’m finding myself veering slightly towards grandparent territory.  Aside from love and support, I feel like two of my most important responsibilities as a parent include holding my children responsible for their actions and giving them the tools and guidance to thrive intellectually, physically, and emotionally.  Like most other parents, I want them to be grateful and realize the value of hard work.  I think it all adds up to the concept of delayed gratification.  Do the hard stuff first, fun stuff second.  Simple, right?  In my current life situation, there are two problems with this.  First, my kids are more immediate gratification individuals.  Second, my motivation for delayed gratification in life has pretty much gone out the window.  As I’ve stated before, my plan of enjoying the fruits of my labor later in life may not pan out like I had hoped anymore.  With regard to raising my children, I guess selfishly I thought if I “raised them right” I’d be around to see them morph into functional adults.  Now that plan is on hiatus too.  Add up all of these factors and I’ve found myself retreating from some of the more tasking parenting duties.  For example, in their spirited playtime my children are constantly leaving a trail of toys in their wake.  Of course, it is then their responsibility to clean up when they are done before any more fun activities can happen.  Many times, that fun activity is watching a little TV at night.  This is actually a fun activity for me also because I get to take a break, talk to my husband, sit down…you get the picture.  This leads to a little conflict of interest.  My children are world-class procrastinators.  Their abilities truly amaze me.  It takes an enormous amount of patience for me to wait for them to clean up before we can just relax in front of the TV.  I lack this patience after an exhausting day and once in a while, especially lately, I’ll just let the toys slide (or even worse, pick them up myself) so we can get on with the night.  To be honest, if I was ever told I had only six months to live, I’d probably just go out with the kids for movies and ice cream every day.  Obviously that’s not the case, but right now I seem to be stuck between my cancer-brain which is telling me to just live consequence-free in the present and my mom-brain which is telling me that my family and I need to be disciplined in our lives to prepare for the future.  I’m sure this is hard on my husband too.  Sometimes I just feel like the 3rd child now in our family.  I just want to enjoy life and have fun and he’s stuck bearing more of the responsibility.

One thing I’ve noticed about my kids is that they live life thinking my husband and I are invincible.  I think this is a good thing, the last thing I want is to cause my children worry and anxiety about my health, but sometimes they are relentless!  I feel like I live this double life where I interact with adults who assume I’m bedridden and my kids who think I’m a superhero with my super power being the ability to serve their every need.  I think that as a mother, when you are sick, whether it be cancer or down with a cold, you are faced with a balancing act of taking care of yourself and being there for your kids.  I think any parent will tell you they are constantly juggling their needs versus their kids perceived needs.  I say perceived because sometimes I feel like we think our kids need so much more than they really do.  Since I’ve been diagnosed with cancer the juggle has become more intense, but I’ve also been able to cut myself some slack in terms of being a supermom.  I can’t provide twenty novel opportunities and activities for my kids every week.  I can’t attend every event the kids have.  I can’t creatively incorporate a vegetable into every meal my kids eat.  I couldn’t do any of these things before cancer and definitely can’t now.  What I’ve discovered I can do, and I feel like I do a better job of it since being diagnosed with cancer, is slow down and listen.  That’s one of the major things I think my kids want and need, to be listened to, and for some reason my “cancer-brain” seems to be better at listening to them.  I also enjoy their company more and more.  This is partly because they are older and easier to talk to, but also they don’t treat me like I have cancer.  Most adults don’t either, but to my kids I’m still just their mom.

I had a lot of extra help with the kids while I was undergoing chemotherapy three years ago.  This was great, but at times I felt lonely and isolated.  When I got diagnosed with a recurrence recently, I became really scared.  Not only that I thought I would die immediately (which I know now, thankfully, will probably not be the case), but also I could almost feel my kids being taken from me and the loneliness and isolation set in again.  I began to have this paranoia take over about losing my kids, like I was going to be sick and alone, then die.  Then the kids would be at the mercy of my husband (a great dad, of course, but not a substitute for me), our extended family, and possibly a new mother whenever they faced problems in life, which we all know they will.  That was probably the worst feeling I’ve had throughout all of this.  “I will not be there for my kids.”  Thankfully, that feeling has lessened quite a bit.  What I’ve found now is that I want to spend as much time as possible with my kids, but I also don’t want to “deal” with them.  I’m sure that’s what we all secretly want as parents and one of the many hidden treasures of becoming a grandparent.  I think the great dilemma of having kids is that you always want them around you, until they start fighting or misbehaving, then you don’t want to be around them.  Then five minutes after they’re gone, you miss them again.  So, basically I’m still thinking along the same lines as any other parent, I just get more emotional about the day-to-day grind than I used to.

Of course, the possibility of my death happening before they graduate high school or college or get married or whatever life event I’ll miss out on does make me really sad to think about.  I have no doubt that losing a parent at a young age is really hard on a child or young adult.  I’m not sure at this point the best way to prepare for that without needlessly frightening my children, so that topic has been somewhat avoided.  We all have to come to grips with death at some point.  While I don’t think it’s fair for children, I know they will survive.

Telling Others

Telling others you have a problem, however big or small it may be, is always difficult.  I have found the only somewhat comfortable way to tell someone I have breast cancer is if it comes up organically in the conversation, which happens almost never.  Even if I were in an innocent conversation about breast cancer with someone, it would be awkward.  Usually by the point I get around to telling someone, I’m knee deep in small talk and then it just becomes a really bad transition.  “Oh, by the way, I have breast cancer”…dead silence….”Oh, I’m so sorry…”.  And the recipient of this information is really sorry, they feel really bad.  I feel terrible that I’ve brought down the conversation and now not only do they feel bad, but they’re usually stressing out about what to say and how to help.

I’ve gone through many stages of sharing and have seen the pros and cons of “letting people in”.  When I was first diagnosed three years ago, I really wanted people to know what was going on, but also didn’t want to make a big deal about it (mistake number one…it is a big deal and people will make a big deal about it if they know).  I had a mastectomy and chemotherapy, so it would have been difficult to be too secretive (I was not a fan of wearing wigs and my two favorite wigs were drastically different styles, so somewhat of a dead giveaway that I was wearing a wig), but certainly there are things I could have done if I really didn’t want anyone to know.  I told a few people and discovered it was somewhat exhausting to tell each person individually, so I kind of just stopped telling the rest of my friends and family, especially when my hair started to come back and I just wanted to move on with my life.

I definitely learned some things about human nature and what to expect from other people during my first go around with cancer.  I noticed people would assume I was doing some type of treatment or had a certain prognosis because they knew someone else with breast cancer.  Looking back, I should have known that we all like to group people into similar categories and make assumptions based on someone’s characteristics, it really just helps us organize all of the information we are trying to process.  Growing up as an extremely tall child, people assumed I would play basketball, which I did and hated every minute of it.  It always irritated me that no one ever asked me about my true athletic passion, running, everyone just wanted to know how my basketball career was panning out (umm, not great), but my body habitus definitely fits that of a basketball player, not a runner, so now I can see why the basketball questions came up so often.  While it seems to make sense to group others into categories so you can “figure them out” and possibly even try to understand them without directly talking to them, many times you jump to invalid conclusions and assumptions.  I found myself getting really frustrated by these assumptions of my condition, but for some reason I could never quite articulate what I was feeling.  Then, about 6 months after my original diagnosis, another lady with breast cancer articulated it perfectly, “Everyone with breast cancer is different”.  So obvious and simple and probably applies to just about every disease, but so true and it just made me feel so much better to hear it.

Throughout my cancer journey, I have been truly amazed by how much people care and want to help.  Maybe it’s because I tend to fall on the aloof, individualistic side of the spectrum, but I am constantly surprised by the willingness of people to donate time, money, and positive words.  It makes me regret the times in the past when I’ve had friends that have been sick, some having major health problems and surgeries, that I didn’t do more to comfort them.  It also reminds me of what I can do in the future to pay back all of the kindness that has been shown to me.  Part of receiving help though, is also receiving advice.  I periodically get treatment recommendations.  I understand this is given with loving intentions and people just want to give you the lastest information they saw on TV, heard on the radio, or read on the internet.  I’ll admit that sometimes when people are even just innocently asking about my treatment I get a little overly defensive.  “Don’t you realize I am constantly meeting with a great medical team that not only has the best resources, but is also made up of exceptionally intelligent minds that live, eat, and breathe cancer?”  or “Why is it my job to keep you updated on my exact treatments?”  I’m embarrassed to admit I’ve had those thoughts, but I think part of my journey has been trying to understand why questions are asked and comments are made and also realizing I might be getting a little over emotional when I’m trying to process them.  I know curiousity comes from a place of love and concern and I feel everyday I get better at responding to it.  One thing that comes up a lot is my diet.  Am I eating enough fruits and vegetables?  Am I eating too much sugar?  Am I making sure everything is organic?  It makes sense, fruits and vegetables do help prevent cancer and too much sugar and artificial ingredients probably play some role in all cancers (although I’m not sure the extent has been scientifically proven).  My response is that yes, I try to eat fruits and vegetables and decrease my sugar and artificial ingredient intake, but I also need to function without going crazy about what I eat.  For me, cancer has had a lot of similarities to pregnancy.  Chemotherapy and radiation have given me the constant underlying nausea and fatigue that pregnancy gave me, accompanied by a constant craving of carbs and sugar.  So, I guess when you are already feeling a little nauseous and fatigued and really only craving carbs, it’s difficult to listen to dietary advice.  Yes, I realize I should eat fruits and vegetables, but I need to maintain some sanity also.

I’ve been on the other side of this, the person who didn’t have cancer, and I always felt uncomfortable, like I was saying the wrong thing or being insensitive by not saying anything.  As the patient I can tell you, there is no perfect thing to say.  Any kind words help, they don’t even have to be words of sympathy or related at all to cancer.  Some people do definitely have a gift for words of comfort and showing support and that is definitely appreciated, but I would never judge comments made by people or lack there of.  I think all anyone wants in any situation is to be treated fairly.  I get asked a lot if I’m comfortable talking about cancer.  The truth is, yes I’m comfortable, it pretty much consumes my life and is always somewhere on my mind.  I definitely want people to know what is going on and feel comfortable asking.  The sadness is pretty much a constant for me, it’s not like by bringing it up I’m all of a sudden going to remember, “Holy buckets, you reminded me about the cancer!  It had slipped my mind”.  But, I can’t say that I feel good talking about it either, it’s hard to see the sadness in other people’s eyes and hear the sadness in their voices.

I think probably the main reasons people are uncomfortable disclosing their physical ailments are the identity and pity factors.  As soon as I tell people, I feel like I lose a little part of myself and get replaced by the face of death and sickness. I also feel terrible accepting people’s pity.  It’s not that I feel unworthy or guilty, I just feel like everyone’s struggling with something and at this point, I feel pretty normal and healthy.  I feel like there are a lot of other struggles young women can have; pain, autoimmune diseases, and the ever-stigmatized mental health and reproductive issues that unfortunately many are still embarrassed to talk about.  All of these things are probably way more disabling than my cancer is at the moment, but here I am accepting all of this pity.  Not that I’m in denial of what can and will likely happen when the cancer progresses, but sometimes in the moment I wonder if I’m overdramatizing my situation.  The other concern I have with sharing my story is the scare factor.  My initial diagnosis, ductal carcinoma in situ and early stage breast cancer, is really common.  Chances are some of the people reading this blog will be diagnosed with some form of breast cancer and I certainly don’t want to scare people with my rare doomsday tale of progression.  Most people get diagnosed with breast cancer, go through a variety of treatments, and it will never come back again.  They just never share their story of survival, I probably never would have shared mine.

Ultimately I wanted to share my diagnosis because there are just so many people that I felt might want to know.  I would want to know if they were dealing with this.  My ultra-private husband wondered why I would tell anyone other than immediate family.  I can certainly understand why one would not want to share this and would definitely respect that.  But, for me, there were so many people, my co-workers, extended family, friends and neighbors, old friends from high school and college; that I just didn’t feel right not telling.  The “secret” of the diagnosis felt like a big weight on my shoulders whenever I was talking with someone.  I couldn’t be completely present in the conversation.  Again it’s a personal decision and everyone’s different, but I appreciate when others share their struggles and thought I would do the same.

Trials and Tribulations of the Healthcare System

My experiences with health care are growing exponentially as I continue to battle cancer.  I feel my thoughts are pretty standard.  To sum it up, I’ve met some of the most kind and caring people while being in and out of clinics and hospitals.  Health care workers are generally really good people and I can’t say enough good things about my experiences with the people themselves.  The health care system, however, needs some work.

I realize many of the reasons why certain things have to happen.  I get why insurance companies can’t just pay for anything and everything without going through some prior authorizations and other paperwork first.  I understand some of the seemingly pointless double checks and verifications that occur for patient safety.  I understand that hospital billing is crazy in part because not everyone carries their fair share of the responsibility.  Healthcare is an ethical business and one that is dominated by insurance companies.  Hospitals can’t turn people away who can’t pay, but they also need to bring in money to pay their costs.  This, coupled with low reimbursement rates by insurance companies all contribute to a ridiculous bill.  I understand all of this and I think this definitely can be improved upon, but I also think it is really complicated.  While it’s tempting to place blame on evil insurance or mismanaged healthcare, we should realize that we need successful collaboration by these entities.  Our insurance companies need to cover their costs so they can keep providing us insurance.  There are very few of us that could safely say we have enough money stockpiled away to cover medical costs without insurance.  Hospitals are expected to do even more.  They need to not only cover their costs, but more importantly to take care of patients.  I think any cost cutting attempts in healthcare are much more difficult and heavily scrutinized than other businesses because of the ethical implications and high expectations of care.

What really frustrates me and I think a lot of other folks is the lack of what I would call a “common sense” factor in healthcare.  I have a few examples of this.  My health care facility does a pretty thorough check of my insurance coverage before scheduling a high cost procedure (examples surgery, scans).  On two separate occasions I have had a procedure and then a few days later gotten a letter from my insurance saying the procedure wasn’t covered.  In both situations, the letter was wrong and sent out before the proper paperwork was filled out by the doctor.  But, really, does this need to happen?  I feel like this is a situation where the insurance company knows there’s a good chance the procedure will be covered.  Certainly, getting a letter like that after a necessary procedure is alarming and can cause unnecessary anxiety, phone calls, and conversations.

Another frustration for me has been miscommunication between health care providers.  Three years ago, when my primary provider initially discovered the lump in the breast and recommended a mammogram and ultrasound, I had difficulty scheduling the imaging tests.  I was told to call the imaging center that my clinic worked with to schedule a mammogram and ultrasound.  When I called the clinic, I was asked why I wanted to schedule a mammogram.  They did not have an order from my provider and thought I was crazy trying to schedule a mammogram at the young age of 35.  As it turned out, they never received the FAX from my provider.  The fax.  I know electronic records in the health care industry are alive and well.  I still do not understand why my diagnosis of breast cancer hinged on a fax.

I will never forget the moment I was told that my so-called pre-cancer was actually cancer that had spread to my lymph nodes.  I was driving to pick up my son from day care.  It seems there was some confusion about who was responsible for telling me the news (I didn’t have an oncologist at this point, “because it wasn’t cancer yet”), so a physician assistant to the surgeon who performed my mastectomy was the lucky candidate.  To make matters worse, she seemed confused by the pathology report, so she wasn’t even very confident in what she was telling me (again while I was driving).  In the movies, they make out these scenes to be this big important life moment with the doctor sitting behind a large, mahogany desk and the patient surrounded by loved ones.  I have never seen one of these desks or fancy offices.  All of the news I have received has either been via phone (usually while I’m driving or the kids are screaming at each other) or alone in a depressing exam room.

Another point of irritation is all of the protocols created to avoid the mistakes that, to be honest, are just ridiculous.  Every time I go to the hospital now or have any kind of test done, I’m asked my name and birthdate no less than 10 times.  This is not an exaggeration.  This is in addition to scanning the bracelet in my wrist every five minutes.  I understand the importance of this.  I’ve witnessed people getting the wrong medication at the pharmacy because someone didn’t do due diligence in verifying the person’s identity.  But, it’s gotten ridiculous.  I’m usually fairly relaxed in medical settings, but this constant repeating of my information even puts me on edge and frankly I think it’s so overdone that no one even listens to what you are saying.  So much emphasis is put on making entries in the computer and scanning every person and piece of equipment in a 20-foot radius, I feel it really takes away from the healthcare interaction.  Sure, the doctor swoops in and makes eye contact for the 5-minute briefing they give you.  But, the poor nurses are like robot zombies, just trying to get all of the information scanned and entered.

Events like these are unfortunately not unique to me.  I know a lot of time and money is being spent trying to improve these types of issues.  If I had more ambition and more of a roadmap in my head as to how to go about fixing these things, I would devote more energy into the matter.  But, as it stands, I think these problems are just going to be carried on my sons’ generation to solve.

Radiation Therapy

Earlier this week I started radiation therapy.  So far radiation has gone okay.  I have radiation every day and it takes less than 30 minutes total.  I have to wear a pretty intense mask that gets tightened down to a position where my eyelids and mouth are stuck in a half open position, but it is tolerable for 15 minutes.  My goal at the end of treatment is to have mastered the ability to take a quick cat nap while I’m on the table.  I am getting treatments for five weeks, which I gather is more than usual.  So, almost one week done, four to go.

I’ll admit, I guess I oversimplified radiation therapy in my mind.  It’s weird because I’m a nuclear pharmacist, so a lot of people think I have something to do with radiation treatment for cancer.  Most of the drugs I prepare are for diagnostic imaging.  Only a small portion, mainly I-131 therapies for thyroid cancer, would fit into the category of treating cancer.  I understand a lot about radiation itself, but I definitely did not realize how much is involved in treating cancer with high doses of radiation.  I just naively thought a beam of radiation would be directed at my whole chest.  It turns out it’s a lot more sophisticated than I realized.  There is a lot more planning and talk of targeted beams, planes, and angles of attack.

Unfortunately, the office of my radiation oncologist, similar to the office of my medical oncologist, feels like a senior citizen center.  They have daytime TV shows playing in the waiting rooms, fishing and travel magazines with gray haired cover models, adult coloring books, and partially completed 1000-piece puzzles (with respect to the puzzles, you really have to wonder what the average wait time is in a waiting room where people have the time to make a significant dent in a 1000-piece puzzle).  I am always the youngest person by about 30 years.  I try to stay positive, but every time I have an appointment I always wonder why my life has been fast-forwarded 30 years.  Why are some of my years being deleted?

A few weeks ago, I had the initial “planning” visit where I met with the radiation oncologist and was presented with the treatment options available.  I was looking forward to the initial appointment in that I felt that radiation was going to be the miracle treatment that zaps my cancer into remission.  Overall the appointment went really well.  My radiation oncologist seemed positive and caring and everyone seemed to have an appreciation for working with my schedule.  The side effect profile of radiation seems pretty minimal for me and we’ll get to evaluate how well the treatments have worked about three months after I finish radiation.  The only downfall of the series of initial visits was that after all of this positive talk about the plan and possible remission, the word “palliative” was in some of my paperwork.  Because of the ability the cancer has shown to move to different tissues in my body, radiation is palliative, not curative.  I don’t know if it’s from pharmacy school or life in general, but I hate the word palliative.  To me, that’s like giving up.  Semantics aside, there is the possibility the radiation could put the cancer into remission, so there’s still hope.

Next Steps

So, my life expectancy has been drastically reduced.  For better or worse, it is not in my nature to live in the moment.  I’m a planner, always have been.  I plan out the meals I’m going to prepare for the following week; I’ve been trying to plan out my now-obsolete retirement; I’ve been planning out how much longer I’ll drive my minivan.  I plan everything.  Now I’m planning for what?  A few years, a few decades?  Should I stop saving for retirement?  Should I take up tanning and smoking; both of which I think I’d really enjoy?  What exactly should I tell the kids?  It’s driving me bananas.  Honestly if I didn’t have a family I’d probably just give up and spend the rest of my life on a beach in Mexico.  But here I am, trying to plan out how to maximize my time and quality of life for the rest of my possibly short time on Earth.

Now that I’ve been diagnosed with a terminal illness, I’m reminded of examples of people that have greatly exceeded their life expectancy.  Stephen Hawking is one example.  Valerie Harper and Jimmy Carter have lived years with brain tumors.  Sometimes I use the analogy of being diagnosed with HIV in the 1990s.  At the time that was a death sentence, but now those people are still living.  Even though there is still no cure, those people will likely live a full life and die of something other than AIDS.

Despite the diagnosis, I realize there is much to be thankful for.  I didn’t die suddenly in a car accident.  I have time to enjoy life and think through any end-of-life decisions.  I am also really glad that I’m the one who was diagnosed with cancer, not my children.  I can’t imagine anything more difficult than having a child with cancer or a chronic illness.  Just in terms of my cancer, I think I have a relatively good prognosis for being Stage 4.  For one thing, it is just in one localized area of my skeleton; so really intense, localized therapy is possible.  Also, cancer that has spread to the bones doesn’t travel to other sites as easily as cancer that has spread elsewhere.  It is less aggressive than if it had returned in other usual spots of metastases, the lungs, liver, and brain.

But, to be honest, I’m just not sure what the future holds.  A few years ago, I witnessed a friend with breast cancer pass away within two years of diagnosis.  As much as I’d like to be positive, I also want to be realistic and be prepared for more negative outcomes.  Ultimately, the only things I can do are hope for the best and do my best to remain healthy and positive.