Our doctor knows more than your doctor

So you're probably wondering why I haven't posted about the results of my last CAT scan, right? Since my last post was in May and I was already a few days behind getting it scheduled it is logical to assume I have already had my scan and that all things were fine. This is assumed because I would have posted otherwise, right? Well enter stage left an insurance company. Not an EVIL insurance company. Just your regular old FOR-PROFIT insurance company. During my treatment I was pretty happy with my medical insurance company. I know I joyfully challenged my disability insurance each time they closed or rejected a claim; but my health care coverage was pretty easy to deal with.

Now that I'm due for "routine monitoring" THEY disagree with my doctor's belief that I should have a CAT scan. THEY think that I should have new symptoms before I get a scan. THEY are jerks. Up to 70% of patients with my facts and circumstances will relapse - and the majority of recurrences happen within 2 years of diagnosis.  Sure most of those probably had some severe symptom. But that's what alternatively enrages me and has caused me to be somewhat of an Ostrich with my head in the sand. I didn't have any symptoms before the cancer was detected. You know, it was detected at stage 4, had spread to my lymph nodes, and I had a tumor the size of a walnut on my ovary. I didn't have any discomfort, no pain in my bones, no bleeding, and I was running 20-ish miles a week.

It seems pretty simple to me that this is the most critical time to be vigilant with surveillance. It's a shame that my insurance company disagrees.

How quickly we forget...

When I started this blog I made a commitment that I would keep writing. That has been hard for me. I no longer have all the "free time" I did when I was in treatment. I certainly don't wish for it back, but my posts have become shorter and longer apart. I had a cancer checkup in February and everything was fine. Today I went in for a mammogram. This was as a follow-up to the mammogram I had in November. It was a quick trip today and I was able to get my pictures taken and reviewed almost immediately. Luckily things were "probably benign" so I don't have to go back in for another 6 months. Yippee for what it's worth.

I am also due for my next cat scan. I am actually a few days delinquent in scheduling it. I had contemplated having my mammogram and cat scan on the same day; but realized that you just shouldn't try to pack that much fun into a Wednesday.  There's another reason I let things slide a bit. I am writing this while sitting in a hospital with my aunt. She's not doing well. Not well at all. So I am going to spend the week worrying about her. I'll get to my CAT scan soon enough. And if you're really worried I promise I will call tomorrow and get the next available reasonable appointment.

It slices it dices

My dad had a very odd sense of humor. One of the most memorable “funny” things he would do is ask people if they wanted to compare scars. Having endured a number of surgeries including appendix, gallbladder, and his knee, he quite an assortment all over the place. Since I had my appendix removed when I was in high school I had a formidable scar of my own to present and it never occurred to me that this wasn’t funny to most people. Since then, I’ve had so many other surgeries that I actually forget some when I’m counting them up. I think I could finally take him on and win! And that’s not even due to the most recent surgery I had, which was on Wednesday before Thanksgiving. In my last post I wrote of the impending joy of having my port removed, but it was truly an emotionally awesome event. It wasn’t without pain or trauma, but totally worth it all said and done. I considered posting a picture of the extracted port and the surgery site, but the gross factor isn’t worth it for people who are a bit squeamish (perhaps a subtle indication that dad’s jokes are only funny to a select group of people with a sick sense of humor – me included).

So the surgery was kind of cool. I went to my oncologist’s office (I know – weird that it wasn’t at the hospital). I donned a sexy pastel flowered robe that closes in the back, some cool blue booties, a matching fashionable hair net, and wrapped myself in the toasty but blankets that are so familiar to medical settings anticipating my oncologist’s arrival.

I got to be awake for the whole thing and they numbed up the area and then cut cut cut away. He had to stop a few times to numb up more of the area – yeah – when they cut places that aren’t totally numb it kind of hurts! I think I was so excited that I could have endured the whole surgery without anesthetic. We kept up a nice constant chatter (probably to keep me distracted) and he was kind enough at one point to reassure me that things were going fine… cause when you’re lying powerless on a table while someone’s hacking away at you, the time seems to tick by quite slowly and you start to wonder what the problem is. Finally he got a good grip on the thing, yanked it out, sewed me up, washed his hands and promptly checked his phone for messages. That’s the kind of efficiency you like to see!

All in all a good way to spend the morning and I headed home with the hopes of spending most of the day lying on the couch playing video games enjoying a well-earned vacation day. I shouldn’t admit that I finished drafting one performance appraisal in this state – but I felt it needed to be done. I also had a tiny bit of a scare that evening as I still had some bleeding, but a change of the bandage and another hour of video games with a 4 pound bag of sugar on my chest putting constant pressure on the site quickly resolved the issue. Now just a few more weeks of ouchiness and I should be right as rain.

Good, better, best

I have three pieces of news to share. For once they’re all pretty positive. I hate to put any sort of caveat on good news, but the truth of the matter is this is that most of my updates are just data points along the way rather than a definitive “all clear”.

Nevertheless, the first piece of news is that I went in for a follow-up mammogram today (Wednesday 11/16/2011). It took a long time, even though I had checked in bright and early for an 8:45 appointment they didn’t get to me until a after 9:00. Then I had the joy of going back to the staging room to wait for the radiologist dr. to read the images. They came back for me and told me they wanted to do an ultrasound too. I tried very hard to get a grip on my emotions as I hopped up on the table and lay waiting for the radiologist to come in. Those two or three minutes when you’re just sitting by yourself are terrible torture. Fortunately it was really only a few minutes before the dr. showed up. I told him up front that I wanted full disclosure about what he was seeing during the exam so that I would have as much information as I could get out of the visit. He spent about 5 minutes checking things from a bunch of different angles and ultimately concluded that he couldn’t see anything worth being worried about. Being overly cautious he suggested a follow-up in 6 months just to double-check things, but reassured me that there’s nothing concerning.

The second piece of news is that last Friday (11/11/11) I had my 1 year post-cancer-treatment follow up. This included a full CAT scan. That came back completely fine. Yup it’s exciting to be considered “cancer free” and “in remission” for a full year. That’s great news since 60% of the cases recur within one year. That still means we have a ways to go – as my doctor says my odds didn’t change, we just have more data. But I will take these small victories any way I can get them – and what a fantastic date to commemorate the occasion.

Which brings me to my last piece of news. It was recommended to me that I keep my power port in until I passed my 1-year mark. I also decided to wait just a few more days to get past the mammogram. Walking out of the screening this morning my first call was to my oncologist’s office to have them schedule the port removal. It has been such a ugly, annoying, horrific, and painful thing and a terribly depressing reminder of the potential risk of recurrence. There are so many things I can’t do without it getting in the way. When the kids try to climb over me I often get an elbow jabbed in it, or a head-butt when I bend over to help them put on pants because they’re jumping around. I can’t wear my laptop-bag cross body on the left side without the strap rubbing and hitting it. Heck, I can’t even wear a seatbelt comfortably. So I am overjoyed that I get the darn thing out. That is scheduled for the next available appointment, which is Wednesday 11/23 at 9 AM. I am so so so excited! And I’m already plotting a tattoo to go around the incision site when this whole thing is behind me.

oh no - really?

Last week I decided to get my baseline mammogram. I had been putting it off for a while in some vague assumption that I couldn't possibly be at risk for two different cancers. Then I got a call today. I knew it was not going to be good news because they're not supposed to call. They're supposed to send you a letter if everything is normal, dammit. I'm not saying they found anything "bad" just inconclusive. So I am going back "at the next earliest appointment" which is a week from tomorrow... yeah 8 more days before they can do any follow up.  I am not really worried because the woman on the phone with her delightful voice assured me that 50% of people who come in for a baseline are asked to come in for some reason. However I kind of go into shock when they say anything needs follow up. I barely took in enough information to ascertain that I could call around to a couple of the locations and figure out which one had the earliest appointment. 

Exploring my options and getting an appointment was the first and only order of business on my mind for the next 1/2 hour. No time to worry about pesky details like what the implications would be if there were an actual problem.

Then I had to turn to my trusty friend: The Internet. I was sure that the Internet would set my fears at ease -- can you hear the sarcasm coming through on that one? Turns out I couldn't find ANYTHING to substantiate that 50% of the baseline mammograms require some follow up and there is certainly nothing that I found to tell me how many of those turned out to be "nothing" after all. I will see what I can do to keep it together for as long as I can. But I expect it will be at least three weeks before I get any actual results.  Not to worry - you'll get an update here one way or another.

the promise I made to be timely...

When I started the blog I had made myself a promise to post frequently about how things were going. A large reason for me to blog was because it was emotionally and physically exhausting to repeatedly tell the same story. I had to go through the ups and downs of my diagnosis so many times in the first few weeks that I couldn't imagine continuing to do that over and over again. But a big driver for keeping things going is that when I was first diagnosed with cancer I searched the web for countless hours looking for information, inspiring stories, or any other shred of comfort I could find. I would trip across people's blogs and would have excruciating details on their treatment... and then they would taper off. I would read their stories and then be left hanging - wondering "where are they now" and more importantly "HOW are they now"?  So I admit I have been remiss in my obligations to others who might trip across my story and have little to no way of knowing I'm "fine". I have neglected to report on the results of the most recent visit to the doctor's office aside from dismissing it casually as an almost non-event. Fortunately it pretty much was a non-event. I had no issues and no results that required follow-up.

But to say it was as simple as that would leave out the fact that a few days after my visit my doctor's office called to tell me that my results for most things were fine - but they had forgotten to run a CA-125 test. I know. I thought the same thing: "What? How could you forget to order the test?" So I coordinated with the nurse to get orders for the local lab so I could get the test at a convenient location. Then I promptly forgot about it for a few weeks. And by forgot about it I mean I didn't actually go in and get my blood drawn. This lack of urgency is not just some mis-guided denial pretense or belief that I'm in the clear and don't need to take care of myself and be checked. It's also a bit of a protest against admitting having to go through yet another round of worrying and waiting. I was silently digging my heels in so I wouldn't have to face days of uncertainty while I anticipated my test results. Perhaps also willing my doctor's to feel bad that they had failed me - yet again - in their lack of attention to my care. But alas they didn't call to remind me. I had to once again take responsibility for my own life and force myself to take time out of my oh-so-important-job in the middle of the day to get my blood drawn. I know. After all I've been through you'd think I would be a little better about making my own health a priority.  I suppose you will be happy to hear that I did eventually get a letter in the mail. The test was fine; nothing abnormal; see you in 3 months...

Almost a non-event

Today I went in for my 9 month post-treatment checkup. I know. I am wondering the same thing - where did the time go? And yet we're also wondering how it could only have been 9 months ago that I stopped treatment. The whole experience seems light-years away. Today's checkup consisted of a fairly simple doctor's visit. They asked a bunch of questions about how I was feeling (I'm fine) if all body functions were normal (which they are). They poked, prodded, listened, and gave me a Pap. I will know in a few days there's any need for follow-up - which I highly doubt. Sounds simple enough. I brought a good book and stayed in my happy cocoon of denial until the whole thing was over. I can sometimes fool myself into thinking that I'm just fine. Maybe even pretending that I'm not really going in for a checkup.

But somewhere in the back of my brain I know that with each doctor's visit comes some level of anxiety and anticipation. I know that's the case for today's visit because I made the mistake of researching survival statistics online again. Grasping at straws hoping to trip across a different answer. If only I could ask the question enough times the results would change. So I ended up idiotically reading some medical journal study on effectiveness of follow-up visits only to find out that a limited percentage of recurrences are actually found via follow-up visits! I stopped reading after I got through the executive summary because I didn't really feel like being depressed the rest of the week. I seem to perpetually waffle between denial and panic waiting for the day when I can finally put this stupid illness in my rear-view mirror once and for all. And even though some recurrences aren't caught in post-treatment checkups I am still going to take comfort in the fact that no news is still WAY better than bad news. And right now there's no news.