So, bearing in mind that for me “years” are academic rather than calendar-this has been literally the worst year ever. Here is the highlights (or rather the low lights) and some lessons learned.
Warning-some of what I will share is a bit graphic and will be embarrassing for both of us…but much like Ilona Andrews I feel that it is important to be a little more honest and open about things in hopes that someone else gets what they need.
At the beginning of last summer my left nipple suddenly inverted. My dad’s side of the family has quite a bit of breast cancer so I am very consistent with my self checks. Since I was 35 and knew my first mammogram was coming soon anyway I called my gynecologist and had her order the test a bit earlier than was originally planned. To be honest, it wasn’t as bad as it sounds, you stand there and get your boobs squished feeling a little awkward and embarrassed and then it is done. Unfortunately for me I have very dense breasts so they couldn’t really see anything so they had to refer me for a fancier mammogram and a diagnostic ultrasound. The fancy mammogram still could not see anything, but the ultrasound showed some simple cysts and a complicated cyst in my right breast, and 8 small simple cysts in my left breast. It also found a 1.5×1.5×0.6 cm mass on my left breast that they categorized as Bi-Rads 3 which they consider probably benign…so I was recommended to have a 6 month follow-up.
While in the waiting game for this, in August Hurricane Harvey hit which completely borked everything up. Lots of stress all around. Our home made it through OK but many of our friends and loved ones were not so fortunate.
Then I tweaked my right hip/glute and gave myself a raging case of sciatica and piriformis (i.e. old lady hip) and spent the next 6 months limping around.
Then my grandmother took a turn for the worse. She died the weekend before Thanksgiving. Now I am not one to go to funerals but the cousin I am closest to called and requested my presence for emotional support. This meant that during Thanksgiving week I had to get myself, one of my sisters, and my mom from SE Texas to Illinois-flights were crazy so we ended up driving straight through for 14 hours. Not good with the raging case of old lady hip.
The funeral was the big catholic extravaganza. Enough said. Got to see family I had not seen in a while so it wasn’t all bad but definitely not the most joyous of Thanksgivings… and I picked up the plague.
SO there I am hacking, wheezing, feverish and limping and that is how December passed.
In the midst of this [redacted1] decided to divorce [redacted2], and [redacted3] decided to sue [redacted4] over [redacted5] so [redacted4] counter-sued over [redacted6]. (Family members have been redacted because I am not ready for more arguing.) Much stress and terror has ensued and [redacted1] not only closed [redacted2]’s bank accounts throwing bills into unpaid status, but apparently has a girlfriend my age now which is creepy and gross.
Meanwhile I was still limping around and trying to find my lost referral for my follow-up diagnostic breast ultrasound.
Lesson #1: When you are supposed to have a 6 month follow-up that requires referral, call the month before it is due to make sure it exists.
I got that referral straightened and finally got a referral for physical therapy for my old lady hip. Went in for my follow-up and started physical therapy right about the same time. Follow up ultrasound showed the mass had grown to 1.8×1.7×0.8 cm which then required referral for a biopsy. In the midst of sending the referral for that, the ice storms hit sending the SE Texas region into an uproar and shutting the cities down for days. Seeing as it was only 17 degrees out for days on end, the warmest we could get the house to was like 58 degrees with all the heaters on. Houses in this area, especially old ones, jsut aren’t built for that kind of cold. The first referral got lost so a second one was sent at which point in time I got frustrated and called the person I was getting referred to and they indicated that they were not in network and that they had faxed that information back to my gynecologist who somehow did not get it.
Lesson #2: Always verify the doctor you are getting referred to is in your network and save yourself some time.
So then my gynecologist sent a referral to someone in my network and it kept getting kicked back from my insurance company. Many phone calls were made between myself, my gynecologist, the doctor I was being referred to, and my insurance company to get it straightened out.
Lesson #3: Always verify WHO can make certain kinds of referrals as per your insurance company’s policies. Turns out while Texas BCBS allows gynecologists to make referrals for ultrasounds and mammograms they do not allow them to refer for biopsies, so I had to call my primary care doctor’s office and it turns out he had not been reading the reports and had no clue what was going on. Finally got that office to send a proper referral through.
So I showed up to the surgeon’s office for what I thought was for my biopsy. Fortunately I was pro-active and brought my scans with me. Unfortunately, the first question he asked me was where my biopsy results were.
Lesson #4: Always make sure they doctor you are being referred to knows EXACTLY why you are being referred.
So once we got that confusion straightened out (turns out other imaging centers often do their own biopsies, mine did not) they got me referred for an ultrasound guided biopsy. Took a bit to get that scheduled and while it wasn’t my favorite thing ever, it wasn’t that bad except for the fact I had a violent reaction to the steritape.
Here is what happens with an ultrasound core needle biopsy. You have to bring someone with you because they don’t want you driving afterward. They may let your companion sit with you through the initial talks and even the initial ultrasound, but they are very unlikely to let that person stay for the actual biopsy. There are likely to be three medical providers in the room with you; the ultrasound tech, a nurse, and the person actually performing the biopsy. They will ultrasound all over and find the best place to keep the ultrasound wand, which is usually right over the mass the closest they can get. This means that the biopsy kind of has to burrow through more tissue than you might expect. This is awkward but not necessarily a bad thing, because you want them to see what they are doing as well as possible. Then they will do a series of lidocaine shots that go deeper and deeper to numb you up. Then they put a giant hollow needle into you (DO NOT LOOK AT IT) and using the ultrasound guide it into the mass. And here is why they have the extra people in the room. They might have one person hold onto your legs and one person hold onto your arms to keep you still. Because what happens next is they slide a weird device into that hollow needle so it goes into the mass and it makes a loud weird snapping noise and it takes a piece of the mass out. They will do this at least 3 times. If you are still then the other people will stop holding you, or at least mine did. Then they put in a little titanium “clip” or BB to mark where the mass is for future imaging. Then they apply a lot of pressure to stop the bleeding and then steritape you up. Then they send you in for another mammogram to check placement of the “clip”. This may cause you to start bleeding again and you can ask for them to redo the steritape because you aren’t allowed to get it wet for the next day or so or to remove it for several days. Also, ask for a boob ice pack. One could wish for black and skulls and cross-bones, but they are the perfect size and shape for this, nothing you have at home is going to work so well…even though it looks like meemaws wallpaper.
Lesson #5: Take a second day off after a biopsy, don’t go to work the next day even if they say you can. You can’t wear a bra, you have to keep using an ice pack on and off, and if your biopsy entry site is in the side boob area, every time you move your arm you will inadvertently smack it. This is not weakness, it is self-care and it will save you time and trouble in the long run.
Also I got released from physical therapy and my hip is feeling much better.
Lesson #6: Don’t assume that pain and discomfort is normal, and if you have something in a place you can’t see on your own, like the side of your boob, have someone else look at it. And if something hurts, and you don’t want to take pain pills, push for other options.
Once the steritape came off, along with all my skin, I started feeling much better. And the result of the biopsy was benign. So one good thing down. Unfortunately, turns out the mass that they were tracking had literally nothing to do with why my nipple inverted. Yikes.
Lesson #7: Don’t ever assume what your doctors are focusing on actually has anything to do with your primary complaint. Stand up and explicitly ask whether or not the thing they are focusing on actually has anything to do with your problem.
So with that being the case they referred me for a breast MRI. I got that scheduled during spring break. Unfortunately, the day before it was supposed to happen they called me to AGAIN ask when the first day of my last menstrual cycle was.
Lesson #8: It turns out that breast MRIs must be done in a very small window, days 7-10 of your menstrual cycle. I don’t know how I could have prevented this scheduling snafu because I had no way to know about that requirement, so just consider this your PSA about breast MRIs, schedule them 7-10 days following the start of your presumed next menstrual cycle (i.e. 7-10 days after the start of your next period).
I got that rescheduled and then the next day (the day I was supposed to be having the MRI) was our 8th marriage anniversary and almost 18 years together which is half our freaking lives so we were all planned up for a fancy night out when I found out one of my best friends since we were 5 years old died.
Lesson #9: There is never as much time as you think there is. Take every chance you have to cherish the ones you love.
We hadn’t talked much the last 8 months because I knew she had a lot going wrong in her life and the last thing I wanted to do was dump on her the misery I have been just dumping on all you readers. Which was stupid, so very stupid, because I know she would have been there for me and maybe I could have been there for her.
This wake I went to of my own accord to try to perform one last service for her.
Which brings me to today. Today was the breast MRI. Let me tell you about breast MRIs. As you may know, MRI machines are uncomfortably small tubes to start with. But for a breast MRI they have this oddly contoured table you get put on which drastically reduces the amount of room in that tube. You can go here to see what that looks like. SO you have an IV in the crook of one arm while you are trying to crawl up on it with a gown that is open in the front to lay down on it. There is an open space where your breasts dangle down and a bar that goes between the breasts. Then once you are lain down and torqued into that odd position they have clamps on either side of your breasts to squish them in together into the bar between them. It isn’t super uncomfortable, mostly it is about like getting a mammogram. Then they slide you into the tube.
As I said though, small tube is made even smaller by this table. They asked me a question and I instinctively looked up hitting my head on the top of it. This made me look to the sides and all I could see was the walls of the tube…which made me try to lift up but I couldn’t because my breasts were clamped to that table. So I ended up a sobbing hysterical screaming mess and they had to pull me out so I could calm down and try again.
Lesson #10: MRIs are hard, breast MRIs are a little bit harder still (I have had both kinds so I know). SO if you have any issues with claustrophobia, be up front and don’t feel like a weeny, lots of people have this problem. Even if you think you will be ok but you sometimes have trouble with enclosed spaces, just go ahead and tell them because they know all the tricks for making this as easy as possible. What they ended up doing was taking all the blankets off me and turning a fan on me very high so I could feel the breeze. Yes it was excruciatingly cold, but it helped a lot. I also declined the headphones because they made me feel even more enclosed. My biggest take-away is close your eyes, breathe, and whatever you do-DO NOT LIFT YOUR HEAD UP. Just imagine it bigger than it really is and do nothing that might alert you to the true size and shape of what you are in.
And I say all that not to discourage anyone from following up. I just want people to know a little bit more about what the process is like. Yes it is scary, but it is less scary I think if you really know what to expect. And nothing about that process, awkward and uncomfortable as it has been, is worse than the worry and the waiting and the not knowing. So if you have been putting off your mammogram, or haven’t gone in for your follow-ups, please do, none of it is insurmountable but the worry will eat you alive.
So right now it is just more waiting. Which sucks. And I’ll admit that it all sucks. But I am putting this out here because almost half of all women aren’t getting the mammograms that they ought to be getting. And while I thus far haven’t had the very worst outcome, I have hit most of the high and low points and I can safely say it is all surmountable. 1 in 8 of us will end up with breast cancer, and your chances of a long and healthy life go up dramatically with earlier intervention.
As for cost, lots of places offer free or low cost screening mammograms, especially in October. Call all the local places and ask what their cash prices are, particularly at offsite imagining only type centers. Yes, based on my experiences you might have to be a bit more proactive with your own paperwork, but the place I went to did every day cash prices of $85. Even if you still can’t afford that, remember that 1 in 8 number, there are almost guaranteed to be people in your life who would be thrilled to pony up the money for you to get tested. And if not, there are organizations where their whole missions are to get people mammograms.