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.

today's not a cliche, is it?

As a kid I could run around in the snow in the thinnest dress and would not flinch in the slightest. Then I was either spoiled by California weather or my perception of cold changed. For most of the last seven years in Seattle I've only been comfortable in a range of 71-82. Fragile like I fine wine! Partly because of that (partly because it was more environmentally friendly, and partly because it will save us money in the long run) Todd and I finally took the plunge and added insulation to the attic. It was a messy all-day effort, but well worth it. Now the house is very warm and I sometimes have a hard time determining if I'm having hot flashes or if the house is just doing a better job retaining heat. Yes, that's right - here comes the cliche - I've been running hot and cold. When I went into surgery we were expecting that I would keep my ovaries. Alas cancer decided that one of them was yummy and hunkered down and grew. So, aside from immediately loosing my potential future ability to biologically make more kids, I also woke up having been injected with hormone replacement so I wouldn't go through menopause on top of everything else. I then got a low-dose hormone patch to keep me "stable" during chemotherapy and radiation. Probably a good idea to not have your body and mind going through too many things at once, but staying on the patch increases your risk of cancer - isn't that ironic? So eventually I knew I wanted to stop. About a month ago I took the plunge. Yes, there are more side effects than just running hot and cold physically, such as running hot and cold emotionally. Todd and the kids don't seem any worse for the wear... yet... The adventure continues because it's a completely individual experience as to how long the effects will last. This adventure may last 6 months or could go 10 years. Alas, this blog wouldn't reflect how fun it is if I didn't point out the awesome upside - this opens a whole new world of conversation with the women who are 50+ at parties. I'm part of a new special clique.

Looking at the new normal

I have to apologize to anyone who has been following my progress and wellbeing via the blog. I promised myself that I would use the blog to tell people things that were going on and to update it somewhat frequently and with honesty. But since I finished treatment in October that commitment seems to have flown out the window. No, I haven’t been fibbing – but I certainly have neglected writing and sharing for the past month. Part of me wonders whether people have moved on since I’m not posting and am now just in “surveillance” mode. To combat that I am wrapping my head around the concept that it’s okay to write without trying to second guess who’s reading this now - or in the future. Another part is that I’ve been incredibly busy. As treatment wound down, I dialed back up my responsibilities at work.  Now the filp-side is true. In the last two weeks I have facilitated one training and attended two others. This meant traveling cross-country to Florida, Wilton Connecticut, and Chicago.  Throw on top of that Thanksgiving travel, three snow-days where the kids were out of school and you’ve got yourself a full agenda. Looking in to the future also planning travel to Santa Fe in two weeks. So now you’re probably wondering what spurned the return to the blog or what exciting topic would make me pick up the pen… er… laptop. I certainly have missed writing and have felt a tug towards getting proverbial pen to paper, but alas it is not solely for those reasons that I am writing today. As I mentioned I went to a training this week. I ran into many people I had not seen since last year’s training. Some of them knew I had cancer; others had no idea. I had to re-tell my (now shortened into almost an elevator pitch) story on how I’m doing. I so desperately wanted to just say: “I had cancer, and I’m cured.”  Instead it was more likely to come out: “I had cancer, but at this point things look fine, but only time will tell.” I know there’s a whole book published on life after cancer (which I’m not going to read) but this is a brave new world for me. I have been desperate to get back to normal, but I’m not able (and frankly not willing) to give up the acknowledgement that this has permanently changed me. Let’s just hope it’s for the better, right?