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.

Draining...

Yes, I know it's been too long between posts. After impressing you all with my quick post after surgery I have ignored the blog ever since - sorry.

The important things have been going well: no infection, not much pain, and good reports from the doctors. But the less important things have been getting me down: namely the drain tube and emotional aftermath of surgery. Let's start with the good stuff.

The pathology report from the surgery was very good. The original tumor was gone - no cancer cells found there at all. The other areas that showed up on the mammogram and led to the mastectomy turned out to be "multifocal DCIS", which is basically very early cancers that were in several areas. All of the "surgical margins" were big, which means that the cancer was all far away from the edges of what was cut out. This is good because it means that there is little chance that some cancer was left behind due to being close to the edges. They found 4 lymph nodes in with the breast tissue and 2 of these did have some cancer in them, but not much. This means there is a decent chance that the other lymph nodes still have some cancer cells left as well, but that is why I am going through with the radiation treatments, and small bits of cancer is what radiation is good at clearing up.

I also learned from my oncologist that the lymph node that I thought was abnormal on the PET scan is not really a problem either. She said it was slightly enlarged, but did not light up on the PET beyond the background levels and that she would consider all of the lymph nodes to be normal on that test. The other Doc who first told me the results doesn't deal with PET scans as much as the Oncologist and had given me a more negative spin on the results.

I met with the Radiation Doc this week and got some good news there too. He is thinking that I might need 25 treatments, possibly 30, but definitely not 35, which is what the first Radiation Doc that I saw in November was wanting me to have. He was pleased with those good margins from the surgery and said that he doesn't often see results that good in pre-menopausal women. And in some other news that might help take the edge off the radiation treatments - the clinic is starting a construction project in May. Why is that good? Well, it will take one of their two radiation machines out of commission, so they will be expanding their hours to pick up the slack. This means that I should be able to schedule late afternoon appointments, which I had been hoping for. Partly I wanted to be able to work for most of the day before going in for treatments, but more importantly it will be woodcock banding season and I was REALLY not wanting to miss out on my favorite outdoor activity. Since we use dogs to find woodcock hens and chicks, morning is usually the best time to search since the warmer it gets the harder it is for the dog to work. Here is my favorite photo of small munsterlander, Annie (Annerl Vom Gamskar) checking out the fruits of her labor.

So that's all the good news, and frankly there is quite a lot that is good. However, I am finding that the mental side of this surgery is quite a lot to take. It is difficult to even put into words what it is like. One minute I'm doing ok with it, the next minute I'm ready to fall to pieces. I suppose it is just a normal grief process, but I have to admit it is still catching me by surprise at times. As much as I didn't really want to go back to work this week, I think it has been good to get back to the routine and distractions of the office.

Speaking of distractions though, the drain tube from the surgery is still in place and driving me crazy. It is basically like a piece of drain tile under the skin, curling around from my armpit, across the chest and back around to my side where it exits and there is some tubing and a small plastic bottle shaped like a little hand grenade. You have to squeeze the air out of the bottle and put the stopper in so that there is suction in the tubing to pull out the fluid from the wound. If they didn't do this fluid would collect and the skin wouldn't grow onto the muscle that it is now sitting on top of. They won't take this tubing out until the drainage goes down below 25 ml, and it is taking FOREVER to get down there. So far I've missed two appointments to take it out because it was still draining too much, and the next one is Friday. I have some hope that it might happen Friday, but it's going to be a pretty close call. Not only is a pain to deal with this bottle hanging off of me all the time, the tubing itself is held in place with a stitch in my skin, which doesn't like to get pulled (but which inevitably does get pulled). And the tubing under the skin is really uncomfortable too - I could go on, but I won't.

I'll leave you now with a question to ponder (maybe Dennis can answer this one for me?). Why do people keep giving me tips for minimizing the scar? Is it just me, or is that crazy? Is it like I might not notice the missing breast if there's no scar there to remind me? I can't quite figure that one out...

Out from under the knife

Checked in for surgery this morning at 5 am. They got started around 7 and the next thing I remember is being in the recovery room at 9:30. Everything went smoothly with no surprises (yay!). The pain has been minimal so far - I've only taken one hit of meds for it so far. Felt pretty queasy all afternoon and my first few bites of supper bounced back up, but the rest stayed down and I'm feeling better now. I should be going home as planned tomorrow. That's it for now - blogging on the iPod is kind of a pain.

On to plan B...

I did get the biopsy done last Friday, and had high hopes that I would hear the results on Monday. Well, Monday came and went without any news. And it was 5:30 today before I finally got the call I was waiting for from the surgeon with the biopsy news. And the news was not what I was hoping for, but what I was kind of expecting given that I didn't hear until so late. The biopsy showed more cancer in the new spot and so now mastectomy is pretty much the only option. There's more to this story, and maybe I'll update this post later, but for now I'll just stick with the basic news. Surgery will no be an April 13 and I will meet with the plastic surgeon asap to discuss reconstruction. If there is a bright spot here, it is that I really liked the plastic surgeon so I won't mind having to see more of her.

The good news, that I don't think I posted yet, is that the PET scan looked very good. All the lymph nodes except for one looked normal, and the one that didn't look right is under my collarbone so it doesn't require me to make any agonizing decisions about whether to cut it out or not, since it isn't one that they can cut out. So the chemo did a really good job on the cancer and I will not be having any lymph nodes removed. I will have radiation on them after surgery and that should be able to knock any remaining cancer cells out. I have been much more worried about losing the lymph nodes than losing a breast, so I'm trying to put all of the news of the last week into perspective and get ready to move forward. Just as soon as I get some sleep...

The next curve in the road

I thought I would post an update so you aren't all left hanging after my stories from earlier today.

I just got off the phone with the surgeon, and here are the possibilities regarding the calcifications: 1) totally benign and just happened to change during chemo 2) cancer - if it is cancer it was probably there all along and just got missed due to the dense tissue. Which sounds much better than having some kind of super-cancer that feeds on chemotherapy. He noted that there were those other spots on the MRI that looked suspicious even though we weren't able to find anything with the ultrasound. My choices now are: 1) have a mastectomy and be done with it, 2)have these spots biopsied to see what is going on before deciding. If they are benign I could still have the lumpectomy, if not or they are still looking suspicious then we can still do the mastectomy. If they can get the biopsy scheduled this week I could still stick to the original surgery date of March 30.

I decided that I really want to know more before making this call. Mastectomy and reconstruction means two real surgeries, and lumpectomy would be much easier. Plus I can't stop thinking that I would have regrets about lopping off body parts if I found out these areas were benign after it is too late. So, I asked for the biopsy and now am waiting for the call to see if they can fit me in this week. With my luck I'll have to go buy another sports bra for a biopsy tomorrow (since the other ones are at home) and then have to have a mastectomy and never need it again - ha! Note to readers: I have always found that things you predict out loud don't come true - that's why I wrote that.

The roller coaster ride continues

I bet you all thought that things were on a predictable, even course now, didn't you? Well, so did I - wrong again!

I showed up Monday morning for the mammogram and ultrasound, secure in the knowledge that a tumor that can no longer be felt must have responded well to chemo and so I had little to worry about. The good news is that I was right about that part - the original tumor is barely visible anymore. They can still see the edges of it, so the measurement doesn't seem to have changed much, but it is all hollowed out and kind of sucked in, indicating that most of it has disappeared. So that's the good news.

They also found several calcifications on the mammogram that were either not there in November, or were barely visible, and now they are brighter and bigger. One of these areas is in a cluster, which is evidently more likely when there is cancer. The radiologist (who was the one that I like, so that was good) said that she thought it looked very suspicious and her first reaction was that the breast needs to go. Later she kind of backpedaled on that and said that the surgeon and I would need to talk about it - I'm guessing it's not her place to make that call. She did say that if I was not already a cancer patient, this was an area that they would biopsy for sure. As I read all about calcifications online Monday afternoon, it looks to me like this is just the kind of situation that had me skipping mammograms in the first place. Eighty percent of the biopsy's that they do on these end up being benign. On the other hand, if they really have changed this much in 4 months maybe that is a more ominous sign. I'm still wondering if perhaps something else was different this time - I forgot to ask whether the calcifications in the area of the tumor look brighter now too. The radiologist commented several times that this is extremely rare, and if it is a new cancer that started growing during chemo, it also isn't good. So, welcome to roller coaster ride that is my life, is your seat belt securely fastened?

As I tried to process this news, which isn't really solid news, just new doubts and speculations, I watched the weather forecast develop into a winter storm warning for Tuesday and Wednesday, with a foot of snow predicted. My PET scan was scheduled for Wednesday morning, and I did not want to miss or delay it, so I called the clinic to see how often they close up due to bad weather. Almost never, was the answer, they hadn't closed so far this winter despite some major storms.

So, secure in the knowledge that my appointment would go on if I could get there, I headed to Fargo last night so I could be here this morning for the test. The Weather Channel was even here. If you want to experience surreal, try walking back to your hotel with lightning flashing and thunder rumbling, getting pounded by wind driven sleet pellets, past The Weather Channel guys who are huddled in their van next to a little blue tarp-tent over their camera on the sidewalk. What a glamorous job they have - kind of like a fisheries biologist!

This morning it looked like 8-10 inches of new snow had fallen overnight and several of the major highways were closed. I was sure I had made the right call coming early. Then the cell phone rang. It was the PET department. It seems that the radioactive sugar that they inject for the test is made in Grand Forks, and since the roads were closed they could not get it to Fargo in time for my test. I asked if later today would be a possibility, but she didn't think so because the solution has such a short shelf life they would have to start over and make a new batch. My options for rescheduling were Monday or early tomorrow morning. I picked tomorrow, wanting to get some of this uncertainty cleared up. I would really like to have more than a day to mentally prepare for whatever surgery I will end up having. Although, the PET scan will have limited value for that, since PET scans are not very good at detecting early breast cancers, however it will show if there is anything still going on in my lymph nodes. Since I have to check in at 6:30 am, I decided to just stay here in Fargo for another day and get some work done, rather than spend today driving back home, walking the dogs, and being distracted all day.

So that's where things stand right now. I haven't talked to the surgeon yet, so I don't know what his advice will be regarding a biopsy or perhaps to go straight to mastectomy. It's kind of funny because initially I was all ready to prepare mentally for mastectomy, but over time the doctors kept insisting that lumpectomy was going to be possible and eventually I completely bought into that. To switch gears back to losing my breast now, less than a week before it would happen is not easy. Another lesson in the benefits of living in the moment and not jumping too far ahead of yourself I guess, but that doesn't make it any easier to adjust to right now. And on top of that the question still remains very much open as to whether this is what will happen. How will I feel if I get a mastectomy and then find out that these calcifications were benign? Do I really want to have another biopsy before having surgery? Is this just a preview of what I am if for with future cancer screening? I'll bet it is. Not to mention the more ominous questions, like: Is this a second cancer that was there all along but got missed at first? And, what would it mean if a new cancer has started growing during some of the nastiest chemotherapy out there.

Well, I hope this post doesn't bring you all down, but why should I have all the fun alone, right? And, as I keep reminding myself, I really don't know anything yet, so I'm back to practicing patience with not knowing what tomorrow will bring. Hopefully it brings some radioactive sugar to Fargo by 6:30 am.

Happy St Paddy's Day!

What a day it has been. I had to meet my friend Judy at 7:15 so we could get to Fargo in plenty of time for my appointment this morning. Somehow I managed to do everything except set my alarm last night - I had my iPod all plugged in, alarm ap open with the correct wake up time showing. Everything all set except for the part where I should have changed it from "off" to "on". So I woke up at about 6:50. Luckily all those years of getting ready for school in 5 minutes flat left me with lifelong skills when it comes to getting ready fast. Having almost no hair doesn't hurt in these situations either. I had the pets fed and was out the door at 7:03, grabbed a crappy breakfast and some coffee at the gas station and picked up Judy at 7:15 sharp.

The appointment with the surgeon was awesome. I was so nervous about getting pressured to do more surgery than I wanted, but that did not happen at all. In fact the Doc agreed that my concerns were reasonable, and that the lymph node surgery would not affect my chances of survival. He said that although doing the lymph node dissection is the standard procedure, deciding not to do it is a valid choice and he didn't pressure me at all to go ahead with it. And he ordered more tests so that we will have as much information as possible before making the final decision. You could have knocked me over with a feather, as they say, I never expected this to go so well. So next week I will get a mammogram (and possibly an ultrasound) to see what, if anything, is left of the breast tumor, followed by another PET scan to find out if there is any activity in the lymph nodes. The PET can't pick up very small areas of cancer, but it's the bigger areas that we would need to be worried about. The radiation therapy should be able to knock out small bits that are left. As it stands right now I have the lumpectomy scheduled for March 30, and if the tests show anything bad going it we may change the plan and opt for more extensive surgery after all. It seems that nothing is ever certain in this cancer journey until it over.

I also had blood work done today to make sure I have bounced back from the chemo and everything looked good with that. My liver enzymes are finally back in the normal range, so I could even be out drinking green beer right now, if I was still into that kind of thing. A glass of wine sounds better, but I had to rush off to dog obedience class instead. Maybe tomorrow!

And the final bit of good news for the day - we have a patch of green grass in the front yard! Surrounded by large piles of snow, but it's a start, at least.

Milestones

It seems that I have been getting lazy about blog posts. Rest assured that no news is good news - it just means I haven't been sitting around the house at the computer. I am now done with chemotherapy, having had the final Taxol treatment last Monday. I followed that up with a little x-country ski getaway with some girl friends up at Maplelag. Great ski conditions, great food, great company - it was a really nice break. I managed to not overdo it too much, although it was tough to have to come back early to rest in the afternoon. At least I had the brains not to force myself to keep going and get too worn out.

My hair is officially growing back! I've been seeing signs of growth for several weeks, but in the last week or so it has become noticeable and I have a full head of fuzz filling in the gaps between the stubble of the hair that never fell out. Last weekend I finally got the clippers out and buzzed off all except the very back (where it sticks out below a hat). And this morning I saw that a couple of eyelashes are sprouting. I am down to just a handful of eyelashes now, and have been reminded of my older sister's baby dolls when I look at my eyes. When she was little she used to pull out the eyelashes on her baby dolls, so maybe she would like this new look of mine. At any rate, it seems that I won't have to sport it for too much longer, and I'm just happy that by the time the weather warms up I will no longer be bald. Hats have been fun in the winter, but warmer weather would be much less comfortable.

Now it's time to move on the next step in this journey. I will meet with my Naturopath this week to review how things are going and change up my supplement plan, since I won't need to take some of the things that I have been taking to help with side-effects from the chemo. I'm looking forward to hearing her thoughts on the surgery and the Tamoxifen, which are both coming up for me. It's been so helpful to me to have someone on my team who can give me another viewpoint on treatment options. Surgeons believe deeply in surgery, radiation oncologists believe in radiation treatment, and so on (at least I hope they do, or they wouldn't be doing it). Everyone has their biases, including me, and including the Naturopath. I'm just trying to ensure that the decisions I make are fully thought out and mine, so I won't look back and feel that I was pressured into doing this or that.

I meet with the surgeon on the 17th, and I'm not sure what the schedule will be after that but I expect (and hope) that we will get on with surgery soon after. Since I can't even feel the lump anymore, I expect that a lumpectomy will be possible. How do they do a lumpectomy without a lump, you may ask? Well during the biopsy they put a small titanium clip in to mark the site of the tumor. I was quite distressed over that at the time, as I have never had good luck with metals, at least against my skin. Earings, necklaces, even a watch would irritate my skin and give me a rash. But it seems that this piece of metal has been benign, and indeed the chemo shrunk the tumor to the point where they will need this marker to find the right spot to take out. Then there will be lab work to see if there are still cancer cells active in there or not.

The big question mark for me on the surgery surrounds the lymph nodes. The docs recommend a full lymph node dissection, which means they open up the armpit and take out all of the nodes that are easy to get to. Then the lab sorts through them looking for cancer cells, and the ratio between the number of nodes with cancer and the number without cancer helps them predict the risk of recurrence and spread of the cancer down the line. Supposedly, taking the lymph nodes out also reduces the risk of recurrence and spread of the cancer, but if this is so, then why does the pathology of the nodes that have been removed still predict that risk? The other part that gives me pause, is that there are lymph nodes that showed up on the PET scan as having cancer in them behind my collar bone. Those can't be removed surgically, on so we are counting on the chemo and radiation to get the job done with those. I am feeling pretty strongly that my risk of recurrence or progression is tied to factors other than cutting out the armpit lymph nodes. And the lymph node surgery is far from benign - I won't go into all the details, but when the surgery is done and followed up by radiation, the risk of lifelong side effects is very high - 20% at the lowest, with some studies that look out 20 years finding as high as 70% of women having problems. I can get on board with that if I really believe that it will have life saving benefits for me, but I'm not there right now.

So, we'll see what the next few weeks brings. Maybe there will be more tests that will change my mind. I'm trying to keep that balance between staying open to various options, but still making the best decision for me. I know I've changed my mind numerous times so far, so stay tuned for the next chapter.

And my other big challenge for the next couple of weeks will be to get my head back into my job, with all this other stuff swirling around my brain. I'm feeling better physically, but focusing on work has been challenging to say the least.

Last of the Neulasta

Mostly good news to report today. I had another Taxol treatment yesterday, and my liver enzymes were back to a reasonable level, albeit still higher than normal. The Doc thinks the spike last time was due to the Neulasta, so I jumped on that and said "So I don't have to take it again?", to which she replied "Ah, no. Nice try, but I do want to you get the Neulasta one more time." She didn't think my white blood cells would come back in time for the next treatment without it, but the good news is that it is definitely the last time since next time around will be my last chemo and I can rebuild on my own after that. It's almost hard to believe that this part of my treatment is almost over, and the timing couldn't be better. The days are getting longer, we've had a sustained thaw with several sunny days in a row now in the 40's - it just feels like I am joining with the world in coming back to life and seeing the end of a long winter coming into focus.

Thanks to my Valentine's Day chemo buddy RoxAnn and thanks Mom for the replacement hat. I wouldn't have blamed you for putting the "if found return to:" tag in it since I did lose the first one!

Not a Mutant

I finally got some good news from a test! I do not have any mutated BRCA genes, which means my risk of future cancers, while still higher than someone who has never had cancer, isn't super high. This is also good news for my mother, sisters, and niece, who don't have much higher risk than anyone else. It also means that I don't have any increased risk for ovarian cancer, which is linked to the BRCA genes, so having those genes would put a person at high risk for both breast and ovarian cancer.

Now if I could just shake this headache from all the driving I've done this week!

Out in public

I packed up my compromised immune system and ventured out to a meeting for work yesterday. It's kind of funny because I usually complain about having to travel to meetings and stay overnight, yet as soon as I was unable to go to any meetings I started feeling deprived of the interaction and company of my co-workers. I rationalized that this would be a fairly small group and my risk of getting sick from them couldn't be worse than say, going shopping at Walmart. Of course, as soon as I arrived I started hearing about all the nasty flu bugs that are going around, but no one there seemed to be obviously sick, so I'm optimistic that I will survive the trip. It was nice to be there, to see my colleagues, and to feel like things will indeed return to some semblance of normalcy soon.

Now I'm back home and in a tag team with Rob, he is gone for his work for a couple of days. The rest of this week should be interesting too, since tomorrow I will go see the genetic counselor to find out the results of my BRCA gene test. I'm trying to be prepared for either result. Even though the odds are that I don't have the bad genes, the shock and horror of my original diagnosis was so much worse because I was convinced that I couldn't possibly have cancer. So I want to be open to the idea that I might have the bad genes, or I might not, tomorrow we will know.

I'm also anxiously awaiting my blood work on Friday. On my last blood test my liver enzymes were pretty high. The nurse-practitioner who I saw before treatment said nothing was too far out of line, but my Naturopath was very concerned when she saw my labs since one of the liver enzymes was almost 6 times the normal level. Then, after my second round of Taxol, I noticed that my urine was really dark for almost a week after the infusion. I asked Dr. Google about that symptom tonight I found that it is a sign of liver problems as well, and on several of the Taxol information pages that I looked at this is listed as a serious problem where you should notify your doctor right away. But when I looked at the information sheet they gave me to bring home, it isn't mentioned at all. So I plan to give the clinic a call tomorrow and see how my blood looks on Friday.

Aside from this troubling problem, I still feel much better than during the AC part of chemo. Aside from some joint pain that lasts for a few days and sinus headaches that seem to be coming up regularly, I feel pretty close to normal. Oh, and I'm also tired and having hot flashes, but other than that...it's all good! Looks like I'll have more to post this week - stay tuned!

No shot this time : )

Had another slightly snowy trip to Fargo yesterday for my second Taxol treatment. The good news is that my white blood counts were sky high so I don't have to get the nasty Neulasta shot this time - yay! I've been feeling a lot better so far than on the AC, and have even felt my normal energy level returning at times. Of course, I still have to remember that it isn't all day energy, as I have been tending to expect it to last and it doesn't. But it sure is good to be feeling fairly normal again, even if it is for half the day. I've also been going through my first menopause. I say first because in all likelihood it won't be permanent, but I get to have hot flashes and all that fun. Actually, hot flashes when it's subzero weather and you are 90% bald aren't such a big deal - I take off my hat for a few minutes and the problem is solved. It has been more of a pain at night, when I'm kicking off the covers, then wanting them back, then kicking them off, then pulling them back...At any rate, I'm sure glad it's January and not July! The other good news is that my fingernails are returning to normal. It's nice to be able to pull up my socks without pain. Hope everyone else is having a good week - enjoy the snow, as it sounds like most everyone will be getting some!

Price quiz

Well I only had one guess on the price of the shot, so I guess Jim wins even though it appears that he had the decimal point in the wrong place - the answer is: $4600! And the good news is I am feeling better this time around, maybe because of the extra steroids that I had to take to ward off allergic reactions to the Taxol. Still tired and achey, but hanging in there.

Taxol the day after

Just a quick post to let you know that so far things are going well with the Taxol. No reactions during the infusion, although it takes forever to go in. I think it was about 3 hours for the Taxol, plus an hour in the beginning for all the meds they give first. I had to wear a blood pressure cuff the whole time, which automatically checked my blood pressure every 15 minutes at first, then every half hour when it looked like I was not going to tip over. But the machine thought I was going to tip over since my blood pressure is so low, I set off the alarm every time after I had been laying there for awhile, but that's pretty much normal blood pressure for me. I asked the nurse how low is bad and she said "well, basically if your eyes are open and you're talking to me it's ok". I felt much better last night than I have with the other drugs. From my quizzing the Doctor, it sounds like the anti-nausea drug was the culprit for shutting down my digestion and making me feel lousy the night of the treatments, and I don't have to have that same drug for the Taxol because it is not so bad for nausea. I do still have to have the steroid, but I was able to get a decent night's sleep last night. The bummer is that my blood counts were a little low on Friday and so she is making me get the Neulasta shot again today. If my counts are back up next time she said we can try skipping it, so come on blood, grow! By the way, I got the first bill for that miserable shot last week - guess how much? Come on, guess? Make a crazy high guess and then double it, at least. Ok, I'm going to leave you hanging on that one - I'll give you the answer tomorrow...

Things to be thankful for

I have always tried to count my blessings and I truly believe the old saying that it is not happiness that makes us grateful, but gratitude that makes us happy. So as I entered cancer treatment I tried to find some things that might be good about it - like losing that unwanted body hair that's always needing to be trimmed or plucked or shaved. Who needs nose hairs, right? Well, as it turns out nose hairs are something that you should be grateful for. Do you know what allows you time to sniff that runny nose before it drips? Nose hairs. Do you know that awful feeling when you have a cold and just can't catch it in time? I'm starting to get used to that. I don't know if my nose is actually running more than in a normal winter, but it sure as hell is dripping more. I'm turning into one of those old ladies with the kleenex stuffed up her sleeve (well, it hasn't come to that yet - I keep them in my pocket). And to answer the question that came up earlier in the blog comments - nose hairs are an integral part of the frozen nose hair feeling that you get when it is truly frigid outside. I did some field testing yesterday while snowshoeing at -4 F, and I could not get that frozen nose feeling - just more of the running and dripping, accompanied by a deep chill in my sinuses and strange burning feeling in my lungs. So, that's two things that nose hairs are good for. And don't worry, I wrapped my face back up after my little test - you just have to dress for it, don't 'cha know?

And over the last few days I've found something else that I never thought to be grateful for: normal fingernails. It's seems that a new side effect has manifested that makes my fingernails hurt. I hope this isn't a precursor to having them fall out or something, but I keep remembering how my hair follicles hurt before my hair fell out, and I have to wonder. Anyway, it is kind of like that feeling when you have really abused a nail, trying to pry something, or scraping tape off something for too long, just sore underneath the nail. Now try to imagine that feeling on all of your nails, and then start to notice how many times your fingernails bump up against things in a given day. Just getting dressed is a new challenge. I just trimmed them down short and that seems to be helping. At least typing isn't a problem. And speaking of my hair, just to update those who don't see me often, I still do have some. It's kind of like the hair a baby would have - short, fine, and reddish-brown. All of the grey hair fell out and probably about 90% of it in total, but I'm not completely bald, which I'm grateful for. I hope it holds on through the rest of my treatment.

Even though I'm finding things that I forgot to be grateful for in the past, one thing I haven't forgotten is how lucky I am to have friends and family who care and are helping me get through this. Bitching about the little annoyances is therapeutic for me, but I really am grateful to (so far) have dodged the really awful side effects and to have the support system that I have.

And on that note, I'm off to Fargo for my first dose of Taxol tomorrow. I'm fairly nervous about it and I've read far too many horror stories online, but the chances are it will go well, so here's to hoping for the best!

Awake

Just a quick post this morning to share that I have indeed been keeping my eyes open. While I don't feel "normal", I have recovered from this last round of chemo much better than the one before, and I am actually feeling like myself again at times - yay!

Never a dull moment

It's been a quiet week in Lake Wobegon....

Made it through the last round of AC chemo on Monday, with almost no snow to drive through to get there for a change. I think this time is going a bit better than the last, although I am still struggling with the heavy eyelids today. It sounds kind of funny, but I feel pretty good as long as I just lay back with my eyes shut. The thing that's a drag is that I get to thinking that I could be doing something, but then it turns out to be quite a struggle to keep my eyes open when I try. Nevertheless, I'm sick and tired of being cooped up at home so I ventured to work today and am still hanging in there, writing this on my break.

Tuesday night Rob was off refereeing a hockey game and I was settling in on the couch for a quiet evening, watching Dirty Jobs, waiting for that lousy feeling from the Neulasta shot to kick in. Suddenly a guy with a big flashlight rings the doorbell, which sends the dogs through the roof. Turns out to be a city Police Officer, informing me that there is a gas leak on the next block over and that we would need to evacuate for an unknown length of time. Am I just lucky or what? Actually, I am lucky enough to have friends I can call for refuge from a gas leak, and so I packed up the dogs and myself and headed on over to RoxAnn's house. I am thankful for that because the folks who didn't have a place to go ended up on cots at the National Guard Armory until 3 am. I ended up in a cozy bed in borrowed pajamas, with the dogs safe in the car inside the garage for the evening. When we got the all clear at 3 am, I relocated back to my house since I was already awake from getting the all clear call, and because I wanted to get the dogs back home too. Wednesday morning I ended up sleeping until almost 10:30, which is super late for me. So I guess one benefit of this disruption in my evening was that I got to sleep through more of the Neulasta day than normal.

Now I'm just hoping that the heavy eyelids will lighten up soon...

Hitting the wall

The is starting to wear me down. I feel like I am throwing myself against a brick wall at top speed, because hitting those bricks is sure hard on the cancer. The first few times I bounced back pretty well, but now it's getting tougher. And the more primitive part of my brain (the part that doesn't care that this is also knocking down the cancer) is starting to rebel against the idea of taking another run at the wall.

Today is the first day since the last treatment that I have felt close to normal. Although the nausea and aches faded away after the first few days, this time a deep fatigue settled in that has only very slowly eased up. My eyelids feel so heavy and my head is foggy. I keep eating, thinking that will give me some energy, but it doesn't. About the only time I have felt my head clear is when I get outside to walk or ski, and it was a really nice week to do that with several days in row that were warm (by our standards) and not too windy. That's over now though, as the cold air has moved back in on the coat tails of a New Year's blizzard.

So Monday it's off to Fargo to take another run at the brick wall. Happily, this is the last treatment with the Adriomycin/Cytoxan combo and the next time we will be switching to Taxol. At least I hope that is a good thing. The doctor keeps saying that this is the worst part and Taxol will be easier, but I've heard some horror stories about Taxol, so I'm kind of playing the "prepare for the worst and hope for the best" game on that one. But, at least I'm halfway done with the chemo and I'm ready for this AC part to be over. I can't even find the lump in breast anymore, so the bricks are doing the job. And my lymph nodes have shrunk way down as well, and the logical part of me knows that this is working and worthwhile - so it will force the rest of me to gear up and head for the wall again...