February 28, 2011
So all of our family crankypants magically transformed into sickypants (and I was wearing a skirt today!). Boo. Just a cold, I think, but I already felt wiped out from the weekend.
Working on my 3rd opinion in Milw, should be about in a week or so. I hate having more time to ponder it, actually--the numbers are starting to sway me more.
Totally spaced an acupuncture appt today--shows you how well my head is functioning at the moment. Ben had a sick day today, and I may have to consider one tomorrow...
February 27, 2011
I thought they were ordinary grey sweatpants, but apparently they had some special power on Olive today...Then my jeans turned into them, too! Really, she's either teething or sick or both, poor kid. I even tried taking her to the children's museum for a good diversion--that was successful for about 30 min, and the rest of the time was descending into meltdown. Oh well, I think she had fun for a while.
I'm having second thoughts about my spa getaway--seems a little extravagant right now. Maybe I'll just book a massage or 2...
February 26, 2011
I had a good morning hanging out with Olive while Ben napped and moaned on the couch (he's feeling sick), then he took over and I went downtown to participate. Freezy cold, but good! Wherever you stand, it's good to see people involved and caring.
So here's the skinny on radiation. I haven't made up my mind yet, but I'm closer than I was after Thursday's consult. The first rad onc MD had given me a risk of local recurrence of about 20%, and this one actually was higher at 28%. The first was based on a 2005 study and the other was from 1998, and they're both different ways of looking at the risks. Compelling numbers (they say they recommend it when the risk is >15%), but the studies are a little older and the 28% one isn't a huge sample so that's why I'm not immediately jumping on it. Not to say that I'm not having a reaction to the risk, though.
This second rad onc MD offered to set me up with 3rd or 4th opinions in Milw & Chicago. I've got time if I'm going to do that--I would probably start radiation the last week of March or first week of April. I think I'll pursue the Milw consult to get an opinion outside of the UW Health system by someone who's a very respected breast cancer radiation specialist. As I think I said before, this MD was not dismissive of the side effects of radiation, both short-term and long-term, which I appreciated. He also explained his rationale for not saving radiation as an option for if there is a recurrence.
So what would it mean if I do it? 6 weeks, M-F, after a few long initial set-up appts the daily ones are about 30min. The initial side effects are usually skin issues and fatigue, both of which can be highly variable. If it happens, I think we'll be putting out the call for weekend help throughout so the weekends can be a break for me. I'll let you know fo sho very soon.
If that's the calendar, that would mean I'd be done mid-May. I found my lump almost a full year before that...
February 24, 2011
Finally less pain, and less stress overall. And Olive and I had a fun, non-tantrummy night while Ben was out & about.
Today I met with a second radiation oncologist to get another opinion, more input, more numbers, etc. Teaser!--I won't actually go into all the details because I haven't had a chance to talk to Ben about them in depth yet. What I will say is that I appreciated this MD because he's been one of the first to not try and minimize the side-effects and the impact of having radiation. I'll get into that more later, too. He also offered to set up 3rd & 4th opinion appts with me outside the UW system--with breast radiation specialists in Milw & Chicago--if I was interested. Understanding of my hesitation to sign on the dotted line, if you will.
Okay, I've got an early morning tomorrow and am already up way too late. Goodnight!
February 22, 2011
This is going to be a very busy week where I'm going to have a very hard time keeping up. Today I have a lot of nerve pain shooting around various places, esp low back. And I'm just cranky, too.
I had an appt with my OB/gyn today, first since the cancer diagnosis, and we wound up having a lot of discussion about future options, esp the kid vs no kid argument (in the future, not giving Olive away!). He was trying to remain impartial, but when I talk through the scenario again, it doesn't sound very good. I knew that, but had pushed it away for a while and it just makes me sad to think about again. You know, you hear about young women who have cancer and finish treatment and then have their children that they call "miracles". That's never been my style, but it also wasn't a narrative I'd completely ruled out. Well, one thing I've learned is that cancer brings up a neverending series of questions and decisions, so I certainly know nothing is decided today. Just puts a little damper on the old mood.
February 21, 2011
The weekend was not so hot, esp Sunday with more pain than I think I've had all along. Today there was some lingering, esp low back pain, so I stayed home today. I did one productive thing today--organize the linen closet! And I napped, which I consider to be productive.
Then Ben & I tried to go downtown and take part in all the action, but we were waiting at the Terrace with Olive for the music to start, and both Olive & Ben decided they didn't want to wait around. Oh well, we're there in spirit.
Don't know what's going on, but I'm just feeling kind of sad and don't know what to do with it. Probably didn't help that I was doing some reading, and I'm seeing a reminder multiple places that it'll likely take me as long to recover from treatment as it did to receive it. Another 6 months? I don't know that I can go along with that.
February 18, 2011
Woo-hoo! Nothing about it was super-special, but my PICC line got pulled at the end of it. (Ben documented, so he'll share that in the near future.) No more easy way to mainline hot fudge and coffee! It will feel weird when I'm a couple of weeks out. Right now it doesn't feel like the solid ending because I'll still have a few days of feeling crappy and in pain, and also the radiation decision is not yet made. Next week I see another radiation oncologist, and I should hopefully get more input/opinions from my med & surgical oncologists, too.
So. Sigh. I cannot believe sometimes how much of my life in the last 6 months has been taken over by this. Then sometimes I can't believe that it wasn't worse. I don't like to think back and be scared by any of it, like the surgery and hospitalization and fevers and low counts, but it was scary. But I also never felt like I was at death's door, so there's that--just sometimes a miserable, sad sack!
There has been a lot of loss in that time, too. Tangible losses of loved ones, tangible losses of body parts, less tangible losses of security and confidence in my body and what will come, and so much more. I trust myself and my ability to make good decisions and all that, but I currently don't trust my brain for good, solid thinking because I feel the "chemo brain" effects.
But plenty of good, too. People have come out of the woodwork, friendships have been solidified and strengthened (some have flaked or backed away but that's okay, too)--people are overall very good and kind. It's sad that I've come to expect selfishness in this world sometimes, so this was a good reminder that people will just help because they care, not because they want something in return.
Well, that's enough introspection for now. Bye-bye, death chemicals. Won't miss you...
The surprise was dinner at L'Etoile. Yum! Though it felt a little weird to be eating our bourgeois dinner while the protests for workers' rights were going on outside the window.
My political comment: I have to stand in support of collective bargaining. I was a part of 2 different unions while I worked at UW Hospital and support my former coworkers in their protests. Without unions, nursing as a profession would not be where it is today. I would be paid dirt and expected to do mandatory overtime and patients would suffer. We are intelligent professionals and deserve to be compensated like it. And it's nice to see people caring and acting instead of being apathetic.
Last chemo tomorrow! Whoa!
February 16, 2011
Okay, I'm going to be a little more self-indulgent today (maybe take a drive through Pity City?). I can say a lot of the time that I'm doing well, but that doesn't mean the same today as it did pre-cancer. It's really all relative, isn't it? Again, you adapt, you become okay with it, but it's still not what I want it to be.
So here's my laundry list of what it feels like to be "fine" these days (kind of head-to-toe):
- well, there's the hair loss. I'm not super-concerned about that, but it's weird to have to moisturize my head (it is winter in WI, after all...)
- occasional nosebleeds
- my skin goes from great to a mess in one day
- only really had the mouth sores for one round, but dry mouth is common
- ugh, my teeth! So I was a little delinquent in going to the dentist anyway, but now there are likely multiple problem ones, and even within the last few weeks they've started hurting. Everything's accelerated, and I have to wait 'til chemo's done to go and deal with it. BTW, anyone have recommendations for Delta Dentists in Madison?
- shoulders and chest--the surgical area feels like a rubber band about 2-3in wide is tight around it (like the wide kind that comes on broccoli :)). It kind of pulls my chest and shoulders forward, which throws off my upper and mid-back. Makes me feel old.
- well, obviously I have no boobs. Overall not the biggest deal, but it makes clothes look different. Most dresses, too, are cut for having boobs, so I have to wear the fake ones and they hurt my chest after a while (if I wear a dress, which I only have once so far).
- L arm with the PICC line--PIA of having to wrap my upper arm in plastic for every shower, flush every night, hunt down a coworker every other week to change my dressing. My wound from the port removal is finally healing but I'll have a decent scar.
- fingertip numbness and decreased hand strength, and my wrists have a weird ache
- Menopause! Hot flashes, night sweats (esp around 3am), and in general makes it like Ben is married to a 60 year-old.
- oh yeah, low back hurts, too. Esp after the post-chemo shot (base of the skull, jaw, too)
- leg fatigue, and shooting pain down them. And despite being bald, I haven't lost my leg hair...
- the feet. They have the numbness, and as the day goes on they feel hot and swollen and very uncomfortabe.
I think I got it off my chest. Just had to say it once. Not looking for anything in particular from it, just putting it out there that this whole process still sucks, even though my days can be okay. Some problems will go away and some won't.
Okay, I'm done bitching. Time to get excited for my surprise evening with Ben tomorrow! Just over a day 'til the last chemo...
February 14, 2011
Yay for me, because I have 2 special valentines! Today was actually a pretty regular ole day, with the exception of a bake sale at work and evacuating the home for the evening. (No emergency, just Ben staining some more. Thanks, Mia & Clare for having Olive & me over for dinner!) Ben's got some secret plan for me for Thurs to celebrate the last chemo, so I'll have to wait...
Today's another opportunity to say how much I love him and couldn't do this without him. It hasn't been easy, though we both have a tendency to play it off like we can handle anything. But he's still here, willing to accept me on my worst days, with all my modifications. He's still human and tells me when he's mad at all of this and ready for it to just be done. We both know this is not our finest year. I think we are both just looking forward to the time when we can just relax and have fun again. Here's hoping it's sooner rather than later!
February 12, 2011
That's what I felt like the whole week, but now I'm feeling perkier. (The fumes also refers to the staining of the window trim. Pee-you!) Hung out with Olive for the day, running errands and such, and then I had grand plans of going to the children's museum for the afternoon. She objected by napping an hour and a half later than usual and sleeping for 3 hrs. So much for my attempt at enrichment!
Then we went to Ella's Deli, which keeps every kid happy. But they hardly eat because they can't stop looking up...
Lightening up after too much thinking. I'm just going to enjoy the weekend.
February 10, 2011
Thanks for jazzing this place up, honey.
Today was a day of some work, then acupuncture, then more work, then home, then out with the fam for a burger. (REALLY good burger--thanks, Alchemy!)
Yesterday was busy but I got to catch up with an old friend I haven't talked to in probably 15 yrs.
So all this time is still the debate over radiation, and I think it will continue for a while longer. I've gotten input from 3 docs, books, websites, my acupuncturist, etc, etc. Still more info to gather. At some point I'm just going to have to call it enough and make the decision...maybe next week.
February 8, 2011
I was still just really distracted by the radiation onc thing from yesterday and wasn't a very good employee today. So I made one appt for a second opinion, but that's not until the 24th. In the meantime, with encouragement from others, I'm going to use some resources at my disposal. This may include pulling some research articles of my own, informally consulting with some docs I know, talking again to my medical oncologist, consulting a magic 8 ball, tea leaves, what have you...
I can't speak for Ben, but if anyone wants this whole thing to be done more than I do, it's him. Yesterday was not his favorite day, either. But we're moving on, because tomorrow will be some damn thing or another anyway, won't it?
February 7, 2011
...but, shit. So the radiation oncology appt didn't go the way I wanted. I had basically made up my mind that radiation wouldn't be enough improvement in recurrence rates to make me want to do it. But there were different numbers than I've heard before (as far as my risk of local recurrence now). We'll see--I'll call tomorrow to get an appt for a second opinion, thanks to Ben's insisting.
I was just mentally ready to be done in a couple of weeks. It's a hard pill to swallow to think about another 6 weeks of daily treatments. They are clear that it's always my choice and I wouldn't be wrong to pass on the radiation. But it's also hard to see a greater risk and feel like I can just let that go. I'll tell you the numbers after the second opinion, okay? Just a downer moment. That, and my aches set in as the evening came on.
February 6, 2011
Yikes, that was a stressor. I'd like to say I had no doubt they'd pull it off, but that was an ugly 3rd quarter.
I don't think my body was meant for that right now. I'm hurting today. And Olive felt like being extra active and wiggly--too much energy! She'd better sleep well tonight.
Okay, got to go absorb that one. 'Night, Packer fans!
February 5, 2011
Second to last treatment done. Now just dealing with the usual down-and-out weekend. Here comes the bone pain--the best description is like bad flu achy, but worse.
I had acupuncture Thursday, which was nice. She used a word that sums up how I feel most of the time these days--deficient. Not like every day is bad, just like there's something missing or low.
Saw the MD before treatment and talked about the "after". The plan is to see her in a month, then every 3-4 mos for 2 yrs. They don't do blood tests or scans or anything unless symptoms warrant. Makes sense. I have a consult with radiation oncology on Monday--I will hear them out but don't think it will benefit my situation much. What else? I will get my PICC line pulled the same day as my last treatment. They went down on the taxol dose to hopefully keep the neuropathy from getting worse. Oh, and she said that with the triple negative cancer I have, the biggest risk of recurrence is in the first 3-4 yrs, so if I get to 5 yrs without cancer they would use the "C" word ("cured"). Kind of a mixed bag and could put me on edge a little before I get to 5 yrs... There is another clinical trial or 2 that I may qualify for in the after-treatment time--I'll look into them.
Sue had asked earlier in the week what it's like to be part of a clinical trial. There wasn't a whole lot I had to do differently. I had originally met the criteria for 2 studies, but one was with a drug that could potentially cause some big impact if I had a bad reaction, like increased stroke risk--something I may have considered if I was 20 yrs older, maybe, or maybe not. So I signed up for the one I did because it was the drugs I would get anyway, just different timing and slightly different doses--the purpose of the study was to look into the timing of doses because that can have an impact for each drug. You go through a lengthy consent, and there were a few tests that were done in the beginning (heart function, blood work). Then you're assigned to an arm of the study and then get your schedule. You agree to follow the protocol, which in my case was the daily pill and shot and weekly infusion for the first drugs and the every-other-week treatments for the taxol. The protocols also give them guidelines of holding or changing treatment, like when I was hospitalized or neutropenic, or decreasing dose like now with the neuropathy. That's really about it. Mine had less unknown/less risk than others because we were working with known drugs and doses--so it's not going to lead to a big breakthrough in treatment like other ones could, but it's still answering important questions.
Okay, time to gear up for tomorrow...I may be laying around for the day, but it's good timing to be on the couch! As long as Olive's feeling better tomorrow--got a fever tonight. Boo.
February 2, 2011
Blizzard! I don't know if you know, but there was some snow yesterday. And some wind. 14 inches. So today was a snow day at home--we all had no place to go. It was a nice day hanging out with Olive (Ben was usually busy shoveling/snowblowing or doing our taxes...), but I get worn out by it pretty easily. At least she was in a good mood. Her latest thing is singing a little song, something about a baby.
It was strangely quiet today without Punky around. No nails clicking around, no barking at any noise outside. Also realizing that we're going to have to start picking up food we drop on the floor! Thank you to everyone who's sent their support/condolences. I'm going to feel guilty about this for a while. I know it couldn't have gone in a different direction because it wasn't going to get better, but I'm going to feel bad because I also feel relief. Relief that she won't have to get worse and worse, but also selfish relief that it's not another thing we have to handle with all that we've had going on. I know, kinda crappy, which makes me feel worse...
...which is why I made some fudge sauce. Didn't get much of anything else done today, but at least there's that.
February 1, 2011
Today we said goodbye to our Punkin'. We decided to put her to sleep because she had severe arthritis in her spine-it was fusing together and putting pressure on her spinal cord. She was losing control of her back legs and was having pain.
She was 10 years old. We adopted her in Albuquerque when she was around 6 mos old, so she's been a part of the family since before we got married (she even came on our honeymoon with us, but that's a long story).
For those of you that knew her, some loved her and some tolerated her! She was very excited to see you, I'm sure, and took a while to settle down. Sometimes a sassafras. Shed like the dickens. But still a good dog with a lot of personality.
Since we adopted her without a birthday, we made Halloween her designated birthday (it was about the right time frame, and with a name like Punkin'...). Every year I made her wear this hat and tolerate a picture, and then she could tear apart a new toy.
Super-mad frisbee skills!
Here she and Ben are being serious or something.
Here they are not.
Here she is tolerating Olive. She was very, very good with her and never was anything but nice (though there was the occasional excited tail whap that was a little startling).
She could build a foot-pile like nobody's business (though this isn't really an example). Her feet smelled like corn chips when they got warm.
Goodnight, Punky. We love you and will miss you!