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.

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.

and then they call...

So the phone finally rang. Yeah the doctor's office kept me waiting all day. The nurse had to go track down some of my lab tests. She called me to tell me what the results were before the doctor has even seen them. So I have no medical interpretation of the results... I think I would have preferred her to tell me that she didn't have any news rather than tell me 1/2 an answer. And that's cause the answer's not the one I was hoping for. Sure my Thyroid and metabolic rate is in the normal range and my CBC (complete blood count) is mostly normal. My Hematocrit is a tiny bit low (35.9 when normal is above 36).

Let me preface the news with the statement that things really haven't changed since my last test in November. I had an abnormal is PAP with atypical cells of undetermined significance. In November the results also showed that I was HPV negative. At the time my doctor reassured me that abnormal cells are extremely common post-radiation and that he was not concerned. So this round of tests showed that the pesky abnormal cells are still there, but now I'm HPV positive. That brings two questions to mind: 1. is the change from HPV negative to positive of medical significance? and 2. is it likely that the cells would still exhibit "normal abnormal" characteristics 4 months after radiation? And by that I mean shouldn't they be "normal normal" by now??? Alas I have to wait until WEDNESDAY until the doctor can review my results and comment on them. He's in surgery on Tuesdays, you know, saving lives and all...

Not to worry though, I already spent 5 whole minutes doing internet searches to convince myself that "no, the results are not something to freak out about". But if you don't mind, I might just sit here and obsess for the next two days anyway.

and yet they keep you waiting

The doctor's office tells you it will be about 5 business days to get results. But if your appointment is on a Friday you can bet that they won't actually have any results the following Friday. And since that following Friday was so busy you won't actually remember or think about it until Saturday. And then you'll have the whole weekend to wonder about WHY the results are delayed. Did they want to wait until Monday so that they could schedule a follow-up appointment on Tuesday to see you? When I was first diagnosed my doctor called me on a Wednesday afternoon and asked me to come in first thing the next morning. So if they had bad news it would just make sense to wait until Monday. Wouldn't want to drop the bomb on Friday afternoon and have me worry about it all weekend. Any minute now the phone is going to ring and they'll tell me it's all just fine. But until then just excuse me while I sit here and obsess.

sick, but not cancer...

I crossed my fingers on Friday morning as I headed out the door to my first 3-month checkup. Yep, this was my first quarterly visit to my Oncologist post-treatment. Technically my appointment was planned for the 11th, but my doctor had to reschedule and pushed it to the 18th. Emergency surgery was the excuse. Since he's a doctor I guess I'll accept that as good reason to rearrange his patients. Obviously I knew the visit was “fast approaching” but had pushed it out of my mind for the past several months. Clearly an indication I’m either back in denial or I never left that stage. One of my friends had previously warned me that denial wasn’t a good long-term strategy and this would come to bite me in the butt. Sure enough, on the 11th I woke up with a hazy recollection that I had just experienced a very disturbing dream. In my dream I had various cancer-related symptoms that I certainly was not having in real life. I had to spend considerable mental energy ignoring my subconscious on the drive to work. I made it through my first meeting of the day and then was able to retrieve voicemail that informed me that my doctor wanted to push the whole thing off by another week. “Groan” I thought to myself… Or maybe it was “ugh!” The next week ended up being a complete distraction as the whole family came down with sundry illnesses one after the other including ear infections and the flu. So when I walked into my doctor’s appointment I think I was too weary and run down to have spent any emotional energy on worrying about the results for a second time. Good thing too, because the doc says everything seems perfect. I just love it when he tells me that! Of course visual inspection and poking and prodding doesn’t tell the whole picture, so I’ll have to wait for another few days for all the lab work to come back, but I’m not too worried.




And for those of you who aren’t really keeping track here’s the schedule: I finished radiation in October and had a baseline CAT scan in November 2010. I'm supposed to go back every 3 months for 2 years, and then every 6 months for an additional 3 years. So that equates to 14 visits ending November 2015! A minimum of 14 exciting nail-biting blog posts will be fast-approaching to coincide with those visit ~ and then I’ll hopefully have to retire this blog for something more… uhm… creative?

honestly honesty sucks sometimes

When I was going through the trials of treatment Katarina had not yet started Kindergarten and Sebastian hadn't even turned 3 yet! Even though they were young, I felt it was important to be honest with the kids. They might not understand the full implications of the surgery, drugs, and radiation, but I wanted them to know why I was gone every few weeks, why I couldn't take them to school and why they couldn't jump on me after surgery. Of course we also told them that doctors were working very hard to make me better and that all the bad treatment was just to get rid of the cancer.  Katarina's pre-K teacher commented one afternoon that she was really surprised at how well Katarina was handling things. She was apparently very matter-of-fact about telling people "my mom has cancer, but she's going to be fine". At the time it was comforting to know she had confidence that this was just a bump in the road. I was quite relieved that she wasn't freaking out or scarred. But there were times that I just didn't want to face the conversations. She asked about death and we talked a lot about the fact that I couldn't have more kids. Even through we had discussed it, she repeatedly asked for a baby brother or sister and we had to re-hash why that wasn't going to happen.  Those conversations were emotional enough, but I think I underestimated how much of an effect this has had on her. Fast forward a few months and she entered Kindergarten. A whole new world. It seems in Kindergarten there are all sorts of grand plans about who's marrying who when they grow up. Katarina told me the other day that she was going to marry a particular boy. I happened to know that he had been talking about marrying another little girl, so I asked about that. Katarina's reply was that perhaps he should marry both girls in case one of them can't have babies. In that moment I wanted to take back all the honest conversations we'd had about cancer and that it derailed the possibility of having more kids. I didn't want my little girl to carry that burden. Fortunately I think she just sees it as a logical solution to a problem I hope she never has to deal with.

confidence gets a boost or maybe I should wear my wigs?

Normal hair grows about a half inch per month. Mine has always been slow and it feels like it has really been slow coming in. Finally in January I was ready for my first professional cut in 10 months. It had actually started to get "long" for my tastes (if 1 1/2 inches can ever be long) and I was ready to exert a little control over it. Even though I have received a lot of compliments on my short hair - some from complete strangers - I have been wanting something that had some purpose and that I controlled. As my stylist said the key to super short hair is having some details so that people know you intended for it to look that way. So she snipped away here and there and I walked out with a big grin. I was happy for a few days but slowly it started to weigh on me that I still didn't feel like I had accomplish what I had intended. It just didn't feel dramatic enough. My next move was to pick up some hair color. I decided a nice red was warranted. That also didn't seem to do the trick. A few restless days later I pulled out the clippers and went shorter. Todd really liked my hair when it was super short (~1/2 inch - 1 inch maybe) - I know, I'm as shocked as anyone!  So, I figured it was worth a shot to take off some more length.  It still doesn't seem to satisfy my need to control my hair and make it look the way I wanted it to (no need to point out that I'm probably not qualified to be own hair stylist). The main problem is probably that the texture has changed significantly in the last five months and it also grew in quite sparsely at first. It started out as a very fine super-blond and then grew thicker and darker over the first 1/4 inch. So when my hair was 1/2 inch long it was a completely different texture and color than it is now. I think I will need to just be patient, let it grow a bit, and not be too dramatic. Since it's so short there's no doubt I'll alternatively want to cut and grow it every few weeks. On the other hand it also may change color and texture again without any interference from me. I have never in my life had hair this thick and it's anyone's guess if it will last. I do have to admit that I love the ease of washing and "styling" it. I think that if I can just be confident that it looks purposeful then I should be okay to not mess with it too much. Or, if it really bugs me I could always pull my wigs back out and put them on for fun.