Be Your Own Health Care Advocate

One of the main struggles for us with living full-time on the road has been losing our primary care physicians.  Since we are lucky enough to be more or less healthy, this loss has been somewhat manageable, but over the last couple of years as we have both turned 50 it is getting more challenging.  It’s important to note that if you come from a place that you are willing to return to every year or so, you can keep your doctors, and we know many people who have done this.  In our case though, we wanted to explore new areas of the country and getting back to New Hampshire every year just isn’t a viable option for us. For the first couple of years on the road, we used Urgent Care a couple of times for minor issues, and blew off preventative care.  After I turned 50 I knew things would have to change.  I needed to schedule a colonoscopy, was behind on my annual mammogram, and the only way I knew to get those tests scheduled was through a PCP or Primary Care Physician.

Last year I took a deep breath and set about finding us a new one.  Other than knowing I wanted a woman, the choice was completely random, and I picked a hospital group that was somewhat local to where I was working at the time and called and asked for the first available appointment.  Originally I started looking in Texas, thinking I would would use the San Antonio area as my home base in the winter, but when I tried to schedule physicals I ran into all kinds of problems.  Several medical groups that I called were not accepting new patients and even the ones that were didn’t have any openings for months.  I didn’t necessarily know where I would be 2-3 months from when I called, and more importantly I just didn’t get a good feeling from any of the several places I called.  I don’t know if it was because I was an out of state resident, or because I was on an ACA healthcare plan, or maybe I just caught the receptionists on a bad day, but I didn’t get any warm fuzzies.  So I kicked the can down the road and decided to try again in the summer.

Thankfully, it was much easier to schedule appointments in Oregon, and since my only criteria was that the PCP was a woman, I was able to get in to see her within 30 days of requesting the appointment.  It was weird starting all over again with someone new, and to be honest I didn’t know how much energy I wanted to invest in the relationship because I had no idea if we would be coming back thew following year.  I shared the bare minimum, skipped over any part of my medical history that wasn’t relevant, and scheduled the mammogram and the colonoscopy.  And to be clear it wasn’t the PCP’s fault.  I just found myself missing my doctor of 15 years very much, who knew my kids and my life history, and at that point I just wanted to get through it and get the tests run so I could be on my way.

The colonoscopy went amazingly well, but on the mammogram they found a spot they didn’t really like.  In a completely impressive move though, the Breast Care center sent away for my medical records and within 2 days had a baseline mammogram from New Hampshire and had compared the results and felt everything was fine with no followup needed.  That truly  impressed me.  I carry my medical records in the RV, but not my mammogram results, and they compared images and cleared the spot in record time.  And those experiences in no small part influenced us to return to Oregon this year.  It was Lee’s turn for a colonoscopy and I knew we could see the same PCP for a second year. I once again had no issue getting an appointment for a physical and this year I opened up a little more about my health history.  I don’t think she remembered me at first, but Lee she definitely remembered.  Not surprising really, as he tends to be pretty funny with healthcare people that he likes, and since he had such a good experience I really felt like we were on the right track.

I went for another mammogram, and once again they found a spot that they didn’t like.  This time though they had their own records to compare it with and it was not the same as last year.  For those of you who don’t know, year over year results are a big deal with mammograms.  Many women have cysts of some kind, too much caffeine can cause them for example, and although most of them are benign and go away on their own, sometimes they don’t.  When new ones show up, which happens to me almost every year, the technicians look at the shape of them and your medical history and make a determination as to what comes next.  And this is where things get a little tricky. As my brother the doctor says, looking at these test results is more art than science since you can look at two nearly identical scans and one could be cancerous and one could be benign.  Deciding whether to do further tests is heavily based on your statistical risk factors, which is fine unless you are the one that is the statistic.

I should probably take a step back here and mention that almost everyone in my family is in the medical field.  My father and brother are doctors, and my mother and sister are nurses.  As the “black sheep” of the family I took another route and went into business, but since I have been surrounded by medical talk my entire life I have picked up a few things.  Now you might be thinking how big a deal can medical care be for her since she can just pick up the phone and call someone in her family, and certainly there have been times in my life where all that medical knowledge put me at a distinct advantage, but since we all live in different states, I had my own doctors my entire life, although I certainly have not been above “phoning a friend” when I felt I needed some advice.

I never needed that more than when 10 years ago I had a spot on a mammogram that led to an ultrasound, an MRI, a biopsy, and ultimately a small piece of my breast being removed.  That entire situation had me so freaked out that I called my baby brother and asked him for his advice.  He wasn’t that long from medical school and up to date on the latest and greatest in medicine, and he had a friend from school who was a specialist.  I sent them all of my test results and Eddie gave me someone to talk to that I absolutely trusted, and all of this was with my primary care physician that I absolutely adored.  If you are not a woman it is hard to explain why having a spot on your breast is so terrifying, but almost any woman who has been through the experience will tell you that it is very difficult.  It doesn’t help that each step of the process takes so long.  All in the entire process took over two months and the entire time you are carrying around a sense of foreboding and “What if”.

As hard as that situation was, I did walk away from the experience with some important information.  First, I had unusual breast tissue.  The tissue is dense for one thing which made clear pictures on a mammogram harder, but more importantly despite a complete lack of family breast cancer history I was at higher risk for it once I hit menopause.  Because of this risk, I should never be on hormone therapy for menopause symptoms and it was really important that I get my annual mammograms.  The other thing that I will always remember was that ultimately the decision to remove the small piece was made by my PCP.  Despite numerous tests and the biopsy, she made the decision to have it removed stating, “I don’t like having it in there and let’s just get it out.”  OK, that worked for me.  I had great insurance at the time and I completely trusted her judgement so we had it removed. Once it was out, I breathed a sigh of relief and went on with my life, rarely thinking about it.

Except it didn’t quite go away.  Right before we went on the road, they ordered another MRI for me and for a brief time I was 100% convinced that it would come back with bad results and that would be the thing that kept us off the road.  A couple of years later, I went to a doctor for something relatively minor and after describing my symptoms of pre-menopause he cavalierly recommend hormone replacement therapy.  That was a bit of a shocker and I had to tell him that it wasn’t an option for me.   The look on his face as he realized he had almost screwed up almost made it worth it, but I was left with a deeply uneasy feeling that if I hadn’t known my own medical history or felt educated enough to challenge him, I could have easily just taken his advice.  That is one place where having medical people in my family really helps me.  I know first hand that although they are educated and committed people, they are people and as such make mistakes.  We tend to think of medical professionals as these omnipotent beings, but like anyone else doing a job they are only as good as the information they have.  My Dad often says, being a doctor is often like being a detective.  There are clues that can lead to the correct diagnosis, but sometimes the tests don’t provide the information they need.  That’s where the relationship with the patient becomes so important.

Sorry, I know I am going the long way around here, but it is important that I put the story in the context.   10 years ago I had a full time job, great insurance, lots of paid sick time, a wonderful PCP who I had a long term relationship with and a family full of medical people I could call on.  Despite all of that, it truly was one of the most stressful experiences of my life. So a month ago, when I got the call that they wanted me to come in for a follow-up ultrasound because of a spot they found on my mammogram, my stomach tightened.  Yes, I was much better educated this time around, but I also knew what my risk factors were and my overriding feeling was it was inevitable and my time was up.  That may sound a bit melodramatic, but it is also true especially because around Christmas time I had asked my brother to re-look at those records from 10 years ago.  I was really struggling with hot flashes and other menopause symptoms and wanted to know if things had changed in medicine (or maybe we had made too big of a deal out of the test results) and there were any hormone therapy options out there for me.  My brother, who is a really good guy, did a bunch of research and came back and said, no things unfortunately hadn’t changed and the risk factors were the same.

The day of the ultrasound, I was randomly given one of the radiologists from the pool of doctors and for whatever reason I did not like the guy.  He was older and somewhat abrupt, and when he was called in to consult he obviously wasn’t aware of my risk factors.  He looked at the results, stated they were inconclusive, but because of my age and lack of family history I should just wait 6 months and get retested.  Well that was a problem for me, because I had no idea where I would be in 6 months and even if I did I would be starting all over again with a new set of doctors.  Plus his attitude really rubbed me the wrong way, so I started educating him on my actual history.  At this point he left the room (to review my chart I am thinking) and when he came back in his entire attitude was different.  Now he thought I should have a biopsy scheduled, just to “be on the safe side.”  After he left I was pretty agitated, because he never should have walked into that room without knowing my history.  Plus the fact that they scheduled the followup procedure the following week didn’t give me the warm and fuzzy.

Generally you can tell how concerned physicians are by how quickly they schedule the follow-up appointment.  It doesn’t completely track, but generally the quicker the test the more concerned they are.  Since I could only go on my days off, I needed to wait a full week, but they slotted me in as soon as they could.  The nurses all looked concerned as well.  When you are healthy everyone is generally smiling, but in this case several people actually said good luck with the test results.  Once I came home and looked at my schedule, I realized that I had actually scheduled the appointment the exact same time as my tax appointment,  The odds of that are pretty high, and since I had pushed my tax appointment twice already I had to call and reschedule.  That turned out to be a good thing though, because since I rescheduled I ended up with a totally different doctor. His name was Dr. Chan and he was everything the first guy was not.  He was extremely serious and calm, and completely up to date on my history.

When I went in I told the nurse I was dreading the procedure because of the pain I experienced the last time it was done, but they both assured me they would make sure they used plenty of local anesthesia and if I experienced any discomfort to let them know immediately and they would stop.  For those of you who have never experienced a breast biopsy, think staple gun with a needle in it.  They only use locals to numb the area and both times I had it done they had to “punch in” three times.  Twice to take samples and once to place a small marker, which lives in your breast going forward so doctors know where the problem areas were.  The first time I had it done, the area wasn’t numbed sufficiently and it really hurt when they were taking the sample.  This time I didn’t feel anything immediately, which was nice, but I have experienced soreness for several days now.  And because this was scheduled on a work day, I had to drive myself 2 hours to get there and then 2 hours to get home.  I couldn’t lift anything heavy for over 24 hours, which turned out to be a bit of a problem at my job the next day, and the soreness didn’t help my mood any.

Basically I was a mess, and since the results wouldn’t come in for 2-5 business days I was carrying around a strong sense of foreboding.  It didn’t help that simultaneously I was dealing with some major work issues, our truck broke down, and we were planning to meet our daughter in Seattle.  My emotional cup was way overfull and the only thing getting me through was the few women that I worked with who I told.  Most women have a story in their past where they have had some sort of similar scare and every one of them who had, was completely supportive.  That was a good thing, because I was really downplaying my anxiety to Lee because I didn’t want him to worry.  And if you are reading this and are my friend or family and are wondering why I didn’t say anything, I’m sorry.  I really was trying to hold it together in case it turned out to be nothing and except for the people I had to tell at work for logistic reasons and my brother who I asked to look at the test results, I kept it to myself.

And ultimately the results came back as benign, which was of course great, but  I didn’t realize how much I was carrying around until that moment, when I found myself needing to sit down and take a few deep breaths.  Lee was generally surprised by the strength of my reaction, so I suppose I did a good job of hiding my feelings there, but again anyone who had been through this won’t be.  And it was also a huge wake-up call. This incident reinforced how important it is that we are our own healthcare advocates.  I am lucky because I have some insurance and more importantly an HSA account with the funds to cover the bills.  I have to ask myself would I have made different choices if I would have needed to pay out of pocket or would the doctors have run the tests at all? Even without cost being a major factor in this case, it was still a struggle to get the right tests run, because yes, despite the fact that the test was benign, it was very important that they were done.

And to be clear none of this is going to change my mind about living the full-time lifestyle.  I knew coming in that we were rolling the dice when it came to our healthcare and don’t regret accepting that risk.  But it is an increased risk, and it’s important that we are honest with ourselves about that as we travel.  What I mean by that is obviously I could get sick anywhere, but my chances of early detection are less with the way we live.  The best way to combat that risk is through regular wellness care and educating myself.  When we become full time RVers we learn how to take care of our RV’s and for those of us who pull with trucks are generally obsessive about preventative maintenance.  Our bodies should be treated the same, in my opinion.  We don’t absolutely trust RV techs we don’t know, so why should we put our full faith in a doctor we have no relationship with? And luckily, in both cases, with the internet, we have the means of educating ourselves.  Certainly we will never know as much as trained professionals, but we can know enough to keep them honest.  If you are a person who puts doctors in the omnipotent category, remind yourself that they are also mechanics.  They can’t always diagnose the problem, they do make mistakes, and they never ever know as much about your body as you do.

Oh, and if you haven’t had a mammogram in over a year, please get one.  Yes it can be scary, but you can’t fix what you don’t know.

Update:  Well I was my own health care agent but I wasn’t my own billing agent.  I spoke to the doctor prior to getting the procedure and he estimated it would cost around $1400.  The bill was actually $4700 and the bulk of that was the charge for the operating room.  Even though I had the work done in a standard doctors office in their wellness center, they charged me for an operating room.  I spoke to Providence Medical Center, I spoke to Blue Cross Blue Shield (my insurer) and long story short they are allowed to treat it as an out patient procedure and charge me that much.  There is no negotiation and no appeal and trust me I have spent a ton of time on the phone trying to go that route.  I am working with their financial assistance and may qualify for a break there but that is a painful process.  Honestly I am not sure what I would have done if I would have known the cost.  Probably rolled the dice and not had the procedure.   Anyways, I still believe you need to be your own health care advocate, but I am not doing a single thing unless I get the full pricing upfront. In all fairness if I would have been diagnosed with breast cancer this would have been the least of my worries, but since the test came back negative the price seems pretty steep. 

Update as of 11/6/18: Ultimately Providence Medical agreed to provide financial aid for 100% of my remaining bill.  This was a huge relief obviously, although I did feel bad about needing financial assistance, but ultimately felt ok about it because Blue Cross paid $1100 towards the bill above.  I am sure that amount more than covered their costs for a 40 minute procedure so no one is losing money here.  The whole experience was an eye opener for me though, and going forward I will absolutely get firm estimates on any non-emergency procedures I need to have done!  Be your own health advocate is physical, mental, and financial and although it all turned out ok in the end I really did a lousy job of being my own financial advocate.  Big Lesson Learned!

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13 thoughts on “Be Your Own Health Care Advocate

  1. I know that feeling of relief when learning the results of a biopsy, I’ve been there a few times. I have a problem similar to yours. In the past 10 years I have needed a biopsy about every 2.5 years. Luckily it is convenient for us to go back to Phoenix for our medical each winter. I had my annual mammo in Jan. 2018 and it showed new calcifications, doc agreed that I could recheck this summer while we are in WV. So I went in, armed with a disk of 10+ years of mammos and the corresponding written reports. My mammo was done 2 weeks ago but instead of looking at my history they did a baseline mammo rather than a magnified, they called that I need a magnified because a spot was found. Ok, now let’s look at the patient’s history. Back for the magnified I go, next day the results show I need a biopsy, I said no thanks, I will go back to Phx where I feel comfortable. Last week I mailed a disk and the results to my doc and will feel much better with her recommendations. Once the doc in WV realized the baseline mammo wasn’t justified they offered to not bill my insurance, that was nice of them. I told my husband that I have felt like I was part of a circus for the last couple weeks. Now I wait for a call from my Phx doc and will follow her advise.
    Sorry for the long comment, usually our health problems are not easy to explain.
    So glad that your ordial is behind you for another year and you can start thinking about travel plans for this winter. I believe you’re going to gate guard again. Becki

  2. Geez… if you do not have enough chaos in your days of late! So glad you are OK. Been there with the wait for the biopsy & then the results (thankfully benign in your case & mine), but nevertheless stressful.

  3. Thank you for sharing these personal items with all of us. These experiences that you share whether it is healthcare related, mechanical issues, daily struggles, or anything/everything about money are all things I am so glad to read about. Your experiences set the right expectations for those of us who plan to go fulltime in the future. I also appreciate the line you walk between facts and feelings when you write. I think it’s the perfect balance of both. I know part of why you write is to assist others that fulltime and I wanted to make sure you know you are making an impact. Glad you’re okay and keep up the great blogging!

    • That’s so nice Martha thanks for saying that. That really is why I share these things and exactly the balance I hope to achieve. Appreciate very much that is how you see it. Because that is how I mean it!

  4. Tracy, I am so glad to hear that your results are positive (well technically negative)! I know from personal experience that having your mammogram done and then getting called back for more testing can be stressful. I get holding it in, although I have NO POKER FACE at all; I still do my best to hide things like that which stress me out so my family doesn’t worry either. It’s easier said than done for sure. I appreciate you sharing for sure and if you ever need a shoulder, feel free to lean on mine.

  5. Pingback: Fourth Year – The Emotional Arc – Camper Chronicles

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