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.

I'm beautiful on the inside too!

Today I went in for a CAT scan since I'm approximately 6 months post treatment. There are several nice things about today's appointments. The first, and most obvious is that I was given the great news that there's nothing concerning in my CAT scan! Yeah! This deserves a moment of celebration.  *please hold while I do a little jig*

It doesn't mean I'm off the hook, but it's a step in the right direction. I'm only six months into the 5 year path before they consider me completely in the clear, but I'll take the good news any way I can get it.

The other cool thing about today's visit is that the radiology lab entrusted me with the CD containing the results of the scan - pictures and all. Then I just had to walk it across the street and provide it to my oncologist for interpretation. This is so much better than the last time I had a scan because there was hardly any wait time between the procedure and the results. Sure they had to load and interpret the images and write a report, but that only took them about a 1/2 hour. Then of course I had to wait for my oncologist to tell me what the report actually said, but that was only another hour or so after I had the disk in hand. The more fascinating thing is that because they gave me the disk I could swipe a copy of my images. So finally I have another picture to post. And this one proves that I'm beautiful on the inside too:

I know - I have such a hard time not resorting to cliches. But right about now I have a justifiable appreciation for how my insides look.



Really? Two whole months since the last post?

Yes, for those of you following along at home it has been almost two whole months since my last post. I promised myself that when writing a blog I would make frequent and meaningful updates. But alas, when nothing medical is going on, I don't feel like it is appropriate to just write random updates. But, if you want those, you could become my Facebook friend.

But tomorrow, Wednesday the 18th, is a post-worthy milestone. Early in the morning I will be going in for a CAT scan and later in the morning I have a doctor's appointment with my oncologist, where he will presumably tell me that everything is okay. Then I will donate some blood and other cells to some poor guy in a lab somewhere and in another week I'll get the green light to breathe again (at least until my August check-up). 

The other major news is that today is one of the nicest days of the year in Seattle. It finally stopped raining for long enough that the back patio isn't really soggy. In fact, it's supposed to stay nice the rest of the week. So, I am going to cut this post short and go outside and enjoy what's left of the sunshine!

it really wasn't such a big deal

I went back to the oncologist on Friday (the 18th) and he assured me that the abnormal PAP really didn't have anything to do with my cervical cancer. So there really wasn't any urgency for me to come in and he apologized that I had been stressing about it for the past 2 1/2 weeks. The follow-up was to make sure that other cells weren't becoming cancerous; and, since that was expected to take a long time for them to go from "abnormal" to the dreaded "Cancer", this was not an appointment that we needed to rush into. Of course that wasn't really apparent when the nurse told me that the doctor didn't know if there was medical significance to me being HPV positive. Maybe I missed something as I was frantically writing down things she said. And I can sympathize that it's hard to remember that patients are not versed in medical jargon. I probably do the same thing in my job: forget that people don't know everything that I know and just bombard them with information. I guess the big lesson learned for me is that I should have called her back and asked "why is it not a big deal?" rather than waiting to find out during my appointment.

In other news I found myself a primary care physician. My Oncologist had highly recommended that I see a general practitioner about all my "non-cancer" stuff. My new primary doctor strongly recommended that I go back on the estrogen hormone replacement therapy to help ensure that I don't have significant bone density loss. Since that's one of the worse side effects of going into early menopause I'm now officially back on the patch. It may have had unexpected positive side effects as well. I had been running, but really struggling with breathing and having sufficient energy to make it around Greenlake without feeling like I was running uphill the whole way. The day after I went back on the estrogen patch I had the fastest run in months. Four days later on my next run I beat that time by almost 15 seconds/mile! Go me!

I won a mostly-expense-paid trip back to the dr.'s office

My doctor's office called back and the ultimate conclusion from my last PAP is that he doesn't know if there's significance in the fact that I'm HPV positive again. CR@P! So, I now have the privilege of paying another $40 copay to get re-poked/prodded. The nurse told me that I should schedule my follow-up "sometime before your next visit in three months". HAH! It's like they don't think about the emotional impact it will have on me to know there's a chance that this crap is back. To suggest that I just come in sometime in the next 2-3 months may be their way to underscore that there is no urgency and so I shouldn't stress; but, since I'm the person who's affected, I don't happen to agree. I insisted on the next available appointment. It's in 2 1/2 weeks. Yeah, he's a busy guy. Saving lives and all...

Aside from the obvious I was really annoyed at this setback. I was really starting to feel like I could move forward with my life again. I had high hopes that these quarterly visits were just going to be minor emotional blips along the way. You know, a bit of anxiety building up to the visit followed by some cautious optimism fading into confidence. Instead it's time to spend the next three weeks in denial and then reassess things after the follow-up on the 18th.