Yes, I'm still here...

When I was first diagnosed, I spent a lot of time reading other women's breast cancer blogs. Sometimes they would just end. Had they gone back to their lives? Or had they had a cancer relapse and died? Or something in between? You never know.

So just in case someone stumbles across this narrative of my journey through cancer, I ought to check in from time to time to say that I'm still here on the other side. Hopeful that I won't have to cross back over into that world that is dominated by cancer, but wary of the fact that none of us really knows what tomorrow holds in store for us.

One year later...

Tonight I was sitting outside, having a glass of wine, and thinking that I should probably write a blog post, since it has been one year now since I finished up with treatments. I probably would have just let it go, but then a friend called to ask if it was ok if she gave my blog address to a friend of hers who had recently been diagnosed, and then I decided that I really should do a post. So here I am.

It has been a good year. It took some time to heal from all the traumas of cancer treatment. I went to a physical therapist for myofascial release treatments around the surgery and radiation site and that was an amazing experience. At the time of the treatments, it seemed like he wasn't really doing much at all, but after each one I gained more range of motion and felt less pain. After 5 visits I had gained 70 degrees of mobility in my left shoulder and I was about as close to normal as I could have hoped to be (at least as far as my arm goes!)

We had a mild winter and I did plenty of hiking and cross-country skiing. I discovered that I had a blocked tear duct when tears kept streaming down my face in the cold and I also discovered that blocked tear ducts are a side effect of chemotherapy. Luckily the treatment is fairly benign - the eye doctor poked it open with a tiny probe and even though it took a few tries, that and some massage has done the trick.

Spring came early and I had the best woodcock banding season ever! Annie and I caught 74 chicks and 1 hen. The hen already had a leg band on, as she had been banded by me one year before as a one day old chick. That was quite a rush! I wish it could be spring all year long, but summer has relentlessly pushed its way in and we have put away the bands until next year.

I went out and got myself a fake boob, which surprised me by being very comfortable and natural feeling. I wasn't expecting to want to wear it every day - I guess I thought it would feel like a wig, kind of awkward and, well, fake. But it really feels like part of me and I don't even notice it, which is a pleasant surprise, and couldn't we all use more of those?

So life goes on. Every once in awhile someone will make a comment about how nice it must be to put all this behind me and forget that it ever happened. I look at them somewhat bewildered. After coming face to face with my own mortality, I have learned so much and grown in so many ways, I don't want to forget it all. I want to keep all the lessons I have learned and live life like the gift that it is. Every ache and pain that arises, every lump and bump that makes me wonder if the cancer is back, serves as a reminder that this reprieve could end tomorrow. That makes it sound like I live in fear when I really don't, but I guess I would say that there is a kind of awareness that I never had before. Everything can change in an instant, and while I hope it doesn't, I know now how it really can, and that makes the good things that I have here and now so much better. It's such a paradox to feel healthy, strong, and well; to be positive that I will stay this way; and yet to also be acutely aware that I might not. I'm not sure I could have understood it before, but it's not so bad to really get what living in the moment means.

No news is good news...

As far as this blog is concerned - no updates means things are going well! Since July I have made it through a few checkups with the Oncologist, some rehab on the scar tissue in my shoulder and chest, and a mild, easy winter!

I feel pretty much the way I did before all this started - physically anyway. It has definitely changed my outlook and life and living, but that's not a bad thing. So, as spring approaches I'm getting ready for the woodcock banding season. For anyone who is interested, I am going to start a woodcock banding blog this year. So far it's just a blank page, but I will fill it soon with photos and stories of my adventures in the north woods!

Summertime!

Sorry I've been so slow to update the blog, and hopefully this will be the last update for awhile. I finished radiation on June 29, so that's it for the treatments (9 months later)! Now I just have to take a hormone blocker for 5 years to starve whatever cancer cells might be leftover of the estrogen that they use to grow. I started taking that 2 weeks ago and so far haven't noticed any side effects, which is a relief since I'm supposed to take it for so long.

The radiation people said that my skin looked better than average when I finished up, which makes me wonder what worse than average would look like. It's not like a sunburn, which is what I thought it would be like, although it is red it's more like a rash. Luckily most of the area is still numb from the surgery, because the spots that I can feel are kind of itchy. It's just now starting to look a little better. I never did get worn down and tired again after that one time, so I've been able to make the most of my time off the last couple of weeks.

For those who aren't plugged in to Minnesota politics, the State government shut down on July 1 because the politicians couldn't agree on a budget. Most state employees (including my entire office) were laid off. It looks like they have finally come to an agreement and we will start back up again on Monday. In the mean time, I thoroughly enjoyed my time off, going to the coffee shop every morning and working in the yard all day. I had neglected the yard all spring and it's been a good year for weeds, but things are looking sharp now. I could get used to this kind of lifestyle, if only money would magically appear from somewhere.

Hope that you all enjoy the rest of your summer and that I don't have anything more to post aside from boring checkups that don't find anything wrong. Take care.

Whoville

Sometimes during this treatment process, I feel like the Whos down in Whoville, screaming "I am here, I am here." So many of the people involved in providing care don't seem to have a clue that there is a real person with a complicated life, a schedule, plans, emotions, and a desire to know what is being done to them.

I was reading my chart upside down as the nurse grilled me with the weekly questions that she asks every Thursday when I see the Radiation Oncologist. I saw that there is a column where they write the number of treatments completed out of the number prescribed. On the first week it said "2 of 25", and for the following three weeks they had changed the 25 to a 30. No one EVER mentioned this to me. I wondered if I should let it go just to see if they would ever let me in on the plan without prompting. Is it a stretch for these people to grasp that patients just might be counting down the number of treatments left? That we just might be looking forward to getting done with this? They say that many patients have a difficult time transitioning away from "the comforting and safe atmosphere of the Cancer Center" (quoted from a letter they sent me last week). I laughed when I read that because I can't wait to make what feels to me like my escape from the perils of cancer treatment.

When the Doctor came into the room I said, "So, I'm planning on coming here 25 times, how many times do you think I am coming?." He got a little flustered and told me that due to being premenopausal, I am high risk and it makes sense to give an extra "boost" to the chest and scar area. We actually have no idea if I am premenopausal anymore, since the chemo put me into menopause and six months later there are no signs that I am going to come out of it. And the pathology results after the surgery indicated that there were wide margins around the area where the tumor had been along with no cancer cells found in that area. I agree with him that there is some risk of relapse, which is the reason I agreed to do the radiation treatments, but I think the risk is in the lymph nodes much more than on the scar. I told him I would think about it - I wonder if they will ask me what I decide or just go right on ahead making plans without me again? Maybe I'll just wait to see.

It's been awhile since I updated the blog, so now that I'm done bitching I had better add that I'm holding up pretty well so far. My skin is starting to show where the radiation is hitting me, but it's just like a very mild sunburn that turns to a tan. I have not had much irritation or redness at all. Last weekend I felt like I had something stuck in my throat from Friday until Monday and I got really tired and my mood tanked. When they aim at the collar bone they are hitting part of my throat, so I was afraid that by the end I wouldn't be able to swallow. On Monday I started taking a homeopathic remedy that the Naturopath had given me after surgery. I've been a little skeptical about homeopathy, but open to the idea that there might be something to it. Since I started getting more tired and having side effects as soon as I stopped taking that remedy, I figured it wouldn't hurt to start taking it again. My energy got better throughout the week, my mood improved, and despite the Doctor assuring me that the throat discomfort would almost certainly return by the end of this week, it is now Sunday and I have not had that happen again. Call it woo-woo if you like, but I'm going to keep taking that stuff until radiation is done.

A rocky start

Three down, twenty-two to go. After thinking about it for awhile it occurred to me that if the doctor is having to spend all this time mulling over whether I should have 25 or 30 treatments, then I only need 25. Radiation is scary. I think it is scarier even than chemo. The whole idea of it is that it works slow and you don't feel a thing... at first. Meanwhile the damage can show up years down the road. It's almost like having another cancer, in that the side affects that scare me might show up at any time in the distant future, and so they loom over me for the long term. Not that I expect to sit and think about that much later on. I expect to move on with life and take the best care of myself that I can. But it's hard not to think about it now, when I have to convince myself to go lay under the big machine every day.

Speaking of scary, have I mentioned lately that these doctors could stand to brush up on their communication skills? At the first radiation treatment, everything was very mysterious and new. The technicians tell you what to do, and where the machine will be, and that they will leave the room. All very straightforward instructions without any explanation of what is really going on. I am laying in the exact position that they want me in and am not wanting to risk moving, so I don't ask questions. I did however, wonder about what seemed like a lot of different angles that the machine was shooting at.

Day 2, I'm trying to figure it out a little more. First shot seems like its going for the collarbone area - check. Second and third are taking shots across the chest from opposite directions - ok. Then they turn off the lights to draw on my chest with a Sharpie, I have no idea why but they said the first time that they would be doing this every day. The lights come back on and it seems like there is a lull in the action, so I ask
"Are we done?"
"Oh no" is the answer, "we still have to add the cone attachment and then do one more".
For some reason, the word "cone" rang alarm bells, I asked what the cone was for? And when she hesitated, probably trying to decide how simplistic the explanation should be, I added
"Is it for the internal mammary nodes?"
"Yes it is"
I about jumped off the table.
"I didn't know we were treating those, we never discussed it, and I DO NOT want that" I exclaimed, becoming rather agitated.
The two technicians exchanged anxious looks.
"Go get the Doctor", one of them said.
As it turned out, Thursday is the day I visit with the Doctor anyway, so I had an appointment right after the treatment. The technician came back and said brightly,
"We'll just stop here for today and you can visit with the Doctor about it."

My visit with the Doctor revealed that he recalled from our visit back in December, that I was very concerned about the internal mammary node, so he decided to go ahead and add it to the treatment plan. We never discussed that area at all in the two visits I had with him after my surgery, which was also after the second PET scan had revealed no sign of trouble in the area and really nothing truly alarming in any of the lymph nodes (at least according to 2 out of 3 interpretations of the test).

The concern that I was having back in December was about the first radiation oncologist I had met with, who insisted that we needed to treat the internal mammary nodes. She also wanted me to go 35 times, and stated "I want to do as much damage as possible and really hit the cancer hard". She scared the hell out of me, which was why I came to second Doctor who was equivocal about the internal mammary node and said he could go either way on it. I told him that was fine by me because I didn't want to mess with it.

For those of you who are wondering why this worries me so much, the internal mammary nodes are underneath the sternum, inside your chest. Since we're talking about my left side, that means right next to my heart. Based on the research that I did, treating these nodes with radiation on the left side increases your risk of heart problems without really affecting your chances with the cancer at all. The doctor tried to ease my fears by stating "We had the field set up so that it was missing the VAST MAJORITY of your heart". I didn't feel comforted, but the main thing is that I caught this early and only had one unwanted treatment. The "cone" is now out of my treatment plan. It didn't do much to help me feel better about the radiation treatments though, and I still find myself having to go over and over the logical reasons why I should go through with it.

On the bright side, Annie and I had some good times chasing woodcock this weekend. Here is a better photo of an adult bird. This is a hen that we found sitting on her nest on Saturday. Then on Sunday we found four separate broods and banded 14 chicks - that's a new record for us for one day! They ranged from being just hours old to 13 days old and starting to fly. It is really surprising to find so many in one day this late in season. Usually by now the chicks are flying all over the place and you are lucky to even catch one. It has been a very odd spring and it seems that nesting has been a lot later than normal. Our good banding days are numbered now, since June is upon us and the weather is supposed to take a turn toward summer soon. I might take tomorrow morning to go again, since the high temperature is only supposed to hit 62. After that its looking like 70's and 80's are on the way, and heat not only takes the fun out of it, it also makes it really hard for the dog to sniff out birds.

I'm not glowing yet...

Sorry it's been so long between posts. It's spring - the time of year you are least likely to find me spending time at my computer. Before I get on with the update, I had a request to explain what the heck woodcock banding is. No, it's not anything dirty, woodcock are birds. Here's a picture of one

They come to the northern states and Canada to breed, from Minnesota to New England, and they migrate to Louisiana and the Gulf Coast for the winter. In the fall you can hunt them. The Fish & Wildlife Service has a banding program that uses volunteers with hunting dogs to locate broods in the spring. The chicks leave the nest and walk around right away with the hen, so the dog finds them and points them. The hen will do a flutter flight when she has chicks, flying a short distance and acting injured in order to lure the predators away. The dog has to be well trained to be able to resist the urge to chase her. The chicks defense is to sit motionless and blend in with the forest floor, and they are good at it. Here's one pretty close up (makes it look easy to see - they're not!).

We then locate the chicks. There are never more than four, so we search and search until we find four or give up. They are totally dedicated to sitting still and staying invisible, so 9 times out of 10 you just walk over to them and pick them up. We measure their bills, because you can tell how old they are by the length of the bill, put leg bands on them, and let them go. The past two seasons a graduate student has been putting little radio collars on them and tracking them to see how many survive and learn about their behavior. It's been kind of depressing for me, because now I get to find out how many of them get eaten by various predators. I liked it better when I just banded them and let them go, imagining that they all lived. Here's one last photo of a chick with its little radio collar on.

Now on to the medical update. I did finally get the drain tube out, and it wasn't as miserable of an experience as I was expecting. The nurse practitioner said that the tubes have gotten more "patient friendly" recently, and judging from some horror stories I have heard from others, that is true. Unfortunately, the fluid built up again after the drain came out and I had to go back to have the doctor drain it with a giant needle. That wasn't as bad as it sounds either though, since most of the area around the incision is totally numb. The fluid stopped accumulating after that though, and so a week later I went in for the radiation planning, which consisted of another CT scan and getting tattoos (just tiny spots) that they will use to line me up every time. I had this last week off from treatments and enjoyed several days in the woods looking for birds. Friday was the best day, we found two broods within 100 yards of the car.

I never heard back from the clinic and they told me that we would be starting last week, so I finally broke down and called them Friday afternoon. They were still putting the finishing touches on my plan and booked my first treatment for this Wednesday. I was surprised that it took so long, but on the other hand, I do want them to get it right. They have to map each person's body and program the machine so that the beam is targeting just the areas that they want to hit, while avoiding other things, like the heart. So like I said, I do want them to get it right. So Wednesday I start the daily commute to get radiated for the next 5 weeks or so.