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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.

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.

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.

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.