October 30, 2010

Nappy

Good day/Bad day?: Pretty good

Thanks to Sue & Mia for helping today--Ben got some good hands-free time, and so did I. Today I was feeling pretty alright. Not super energetic, but otherwise no major issues.

The one bad thing? I haven't been able to nap since I was feverish and on the couch. That makes me sad because napping is a gift! I hope it's not gone for too long. I will not stand for that. Sleeping in general has been a little poor and restless--damn night sweats!

But anyway, hanging in there for the first day of a long week.

October 29, 2010

Bad news

Good day/Bad Day?: see above or below...

I thought about minimizing and downplaying for this post, and then I thought better of it. It's time to just be with the fact that having cancer and going through treatment is crappy and that I'm a little short on good news lately.

So here's the long & short of it. For starters, I haven't been to work in 2 weeks, in between the hospitalization last week and the ups & downs of this week--it's making me feel a little rudderless.

I'm neutropenic. Today. For those of you not familiar with the term, it means my white blood cells, specifically my neutrophils, are not abundant enought to fight off infection right now, so I'll be susceptible to a lot. Handwashing, handwashing, no being around sick people, limiting raw food intake, plants/flowers, etc. Not quite bubble-boy status, but I need to be careful. Hard to do when my adorable germ factory comes home every day! My platelets are also a little low, so my bleeding risk is up. All this transpired in the last 24 hrs, because my counts in the ER were actually okay. *More about yesterday--it was really just the fever, and my L armpit is a little tender in the area where I had that fluid collection (that reaccumulated/reswelled), so trying to determine other potential infection sources. The ER was really going in to draw labs, check my blood for infection (blood cultures), urine, any other symptoms. So they got that stuff and sent me home.

Neutropenia also means no chemo. No infusion today, no daily oral chemo (they stopped it during my fever in the last couple of days) for at least the next week. Good news is that the fever went away and hasn't come back today.

I still had a long clinic day today. There was a lot of talking this through with my oncologist, then waiting and waiting for a chest and abdominal CT to rule out a few more things she was concerned about, then going to try to draw fluid out of the L armpit-thing again (they couldn't get anything out, but the good news is there's no pus there! Ew.). The CTs looked good, too, so I guess that's good. Still means we don't know where the fevers (this week or last) came from except for assuming I caught a virus or 2.

As I've been saying, I'm trying to rebuild, but I also found out I lost about 9 pounds in the last month. Hmm.

I guess overall, if you can't tell, I'm frustrated. Knowing the duration of my treatment protocol ('til March), I guess in my own head I was telling myself that I'd expect to be knocked down sometime during the course, but I kept thinking it would be a winter thing. This is earlier than I was prepared to be derailed.

So what's to come? The next week until Friday will be laying low and trying not to get sick. I think that may mean I have another week out of work, too. Next Friday I'll have my blood counts done again and they'll make decisions about my treatment plans. Likely looking at changes in doses. One other bright spot--I don't have to "make up" chemo rounds and get my end date pushed back--I just miss the weeks I miss. So at least the end is the end.

Okay, well I'll let you chew on that, and maybe we'll work to post an Olive pic to liven this up a little...

October 28, 2010

Lather rinse repeat

Today Jen went back to the hospital with a fever. She wasn't admitted this time and is back home resting. She can fill you in on the medical details but I just couldn't wait to post these pictures which document our experience.



BORING!!! Which leads to shenanigans:



Actually, the nurses were very nice and the doctor was a little Skerritt-esque.

October 27, 2010

One step back...

Good day/Bad day?: bad--my body had other plans for me

Another day of being sick to my stomach, headachy, tired (and thought I was getting a fever again, but I think my blankety nap made me way too warm). So much for making plans--there's a going-away gathering for one of my favorite coworkers and I'll have to skip it.

But I rediscovered the joy of cinnamon sugar on toast. Now that's nostalgia! And I'm getting some reading done when I'm awake. There's a book called What We Have, a personal story of a woman and her family that have a family legacy of cancer, too--ovarian & breast, and right now it all seems very applicable. I'll give you a final review...

Continuing down the road

Good day/Bad day?: Tues was good overall

Took the day off yesterday, am still in my "rebuilding" phase, and am not sure what I'll do today. But yesterday was good--I voted (didn't want to take for granted that I'll be out in the general population on Nov 2!), so we'll see what comes of that. I did my duty. Then ran a couple of errands and Ben called to meet for Mediterranean lunch--it felt like a date! Then came home and napped.

For some reason I'm waking up with the headaches still. In the morning, after naps, etc. I'm doing okay with just the Tylenol regimen, just puzzled. I'm back to taking my daily chemo meds, and I'll be back Friday for another infusion and MD visit. My other current gripe is my surgery area--it's been very tight and achy, and holding Olive is hard again. Trying to gently stretch it out...

October 25, 2010

Made it...

...through the day!

Still some headache, but minimal and manageable with Tylenol. I actually drove a little to pick up meds and refresh my computer at work, but that all left me a little woozy and realizing I have some more rebuilding to do, so tomorrow I'm taking it easy. And I'll try to eat a lot, all you surrogate mothers out there!

The saga

Good day/bad day?: fair to middlin'

So for those of you who wanted the whole story of the last week, here we go! (Wow, it really was a week ago tonight that all this started...)

Last Monday I went into work in the AM, had a headache but was otherwise not bad for a Monday, then decided to call it quits at lunch. I got home, ate, and then tried to nap but couldn't and my headache had come back with a vengence. Long story short, I got sick to my stomach, chilled, achy, couldn't keep anything down. Didn't have a temp over 99 when I checked in the evening, but then it went up to 101 at 10PM and I was instructed to go to the ER. Julie escorted me so Ben could stay home with Olive, and we waited quite a long time to get anywhere, esp long to get my port accessed so I could get some IV nausea and pain meds because my headache was the worst of it all. I finally got some relief and they were ready to send me home when I threw up again--then they decided to admit me and I agreed.

They did a few tests: blood cultures, head CT, chest and abd x-ray, trying to figure it out. Essentially the understanding is that it was likely a virus plus a turn in my reaction to the chemo. Simple enough, couple of days off of chemo, right? Well, just when they'd think they had it under control and we'd be talking about me going home that day, something else would happen--one day it was not keeping food down, then Thurs it was the dreaded blurry vision! So that, with the ongoing headaches, lead to a neurology consult, head MRI, and opthamology consult. The neurologist diagnosed me with "cervicogenic headaches" which are treated with PT exercises and muscle relaxers, and the opthamologist said my lower eyes looked like someone had run sandpaper over them and that could cause the blurry vision, side effect from chemo, and drops will manage it.

So eventually I got home. Still not 100% by a long shot. Sat had the headaches and nausea again, and the headaches persist thought I think the rest is gone today. That, and just weak and depleted with a lot of days of not eating. This is what happens when I wax pensive about when it's going to be me wheeled around to appts! Now I really feel I look like a cancer patient, too. It sucks. And it was boring! And I missed a chance to gather with my family for Gram's memorial.

I'm trying to figure out the bright side of it all but am coming up empty. More appreciative of home? Special thank yous to Kathy & Julie, and of course Ben, for keeping everything else going and not even asking me little questions about the details, for just doing it and figuring it out. Very grateful...

October 23, 2010

home sweet home

Just a quick update that Jen came home from the hospital yesterday about 1pm. Then it was off to the ophthalmologist to figure out why her vision was blurry - apparently dry eyes are a side effect of chemo. She is still suffering from some headache action this morning and just wanting to lay on the couch and nap. Sounds like a good way to spend a Saturday...

October 21, 2010

u.s.w.

Und so weiter, what the Germans say instead of et cetera. That's what the past few days have been. Jen is still in the hospital and still having some symptoms. Today she saw a neurologist that offered an interesting hypothesis - a type of headache that involves muscle tension at the base of the neck and has all of the symptoms she's been exhibiting. At least that was how I understood it after hearing about it filtered through Jen's sister. I forgot the name of it, so all you healthcare pros on here can jump right in with corrections and terminology...not my dept! But I guess they are trying a muscle relaxer so we'll see how that goes. She is also skipping her chemo cycle tomorrow.

Anyhow, I think we're all looking to get back to whatever normalcy we had before, and again we're hopeful that Jen will return home tomorrow. She seemed in much better shape today, and here's a picture to prove it!



I was also going to put up a picture of my first attempt at picking out random clothes from Olive's wardrobe and trying to make a non hideous combination for her to wear in front of her little friends at day care. I got lucky the first two days and outfits were pre arranged on hangers for me (Jen is SO organized...sometimes...) But the evening escaped us, so maybe we can try for that again tomorrow...

Thanks Mia for your help Wednesday evening, and thanks Holli and Jorl for the haircut and pizza tonight!

October 19, 2010

Good ol' Ween

Today I'm blogging on Jen's behalf since she's spending the night in a really expensive hotel near Picnic Point. Yesterday, she had a headache all day that got worse into the evening, when she developed a fever. A phone call to the on call oncologist confirmed that she'd need to go in to the ER. After some tests, she was admitted and spent the night. This morning, the suspicion was that she had meningitis...but that has since been discounted. Thankfully. She spent a lot of time sleeping today, at least when she wasn't being poked and prodded by various hospital staff, and the rest seemed to help a lot. She is being observed for the evening and at last report was doing much better. Olive and I hope for her return home tomorrow. Olive is also a little concerned since her dad's past outfit choices for her have been...unorthodox. My argument is that she should be a trendsetter, not a boring old sheep following the crowd.

In any case, all of this worrying about meningitis means there's only one thing to do - play the appropriate Ween song.



Thanks Julie for all your help last night and today!

October 18, 2010

B-L-A-H

Good day/Bad day?: Sat okay, Sunday ugh

Saturday wasn't bad and I was somewhat productive. Thanks to Kathy & Bruce for helping out--hooray new water softener! Then Sun I was totally wiped, on the couch much of the day. So it seems that Friday & Sunday are useless and Sat is a little window of good time. Of course, that was the last 2 weeks, and the next always bring something new. Got to get ready for a busy week...

October 15, 2010

#8= halfway-ish (plus bonus random thoughts!)

Good day/Bad day?: well, chemo day

Today was AC treatment #8 of 16 (then I have another 6 cycles of another drug after that), but time is flying! Except waiting room time--thanks again to Julie for being this week's chemo buddy.

Yesterday was just a full, busy day. Acupuncture in the AM, which I felt changes after the same day--yay!--then a busy afternoon of work trying to get things in place before next week. I was going to tell you something Olive was doing, but now I forgot...

My port scar is still a concern to monitor--no worse, but no better. But at least I'm not facing having to take it out unless it gets infected. One of the many nuisances of this whole experience so far. Some day I'll list them, maybe.

One thing that strikes me as I go to chemo each week is seeing all of the people that need to be wheeled in & out of chemo. I can't help but wonder if I'm ever going to be at that point while I'm going through this--I can hope to avoid the major hits, but I am taking in chemicals daily and winter is coming. It's a little unsettling, even if I am young and otherwise healthy.

Somebody told me the other day that my bald head makes me look taller. It must be an optical illusion akin to the idea of wearing nude-colored high heels to elongate the legs. If I did both, I'd look gigantic!

Time to go nap...

October 13, 2010

Getting over it

Good day/Bad day?: Good

Yeah, I'm a little less hard on myself today. It was pretty good. Nothing profound, nothing much new.

October 12, 2010

Time flies

Good day/Bad day?: Not bad

Had a full day at work today and it went okay-- feeling like things are falling into place for new trainings next week, so that's good.

I do feel better today, but I sure fade in the evening. I wish I could figure this out and give equally in all areas of my life. What do you skimp on? I already feel like I'm skimping on friends & family, on properly expressing my gratitude for all the outpouring of time, gifts, bakery, etc., on just thinking time. That, and I'm always going to feel like I should be doing more at home with Ben & Olive. Don't mind me, I'm just feelilng a little hard on myself tonight. We'll leave it at that.

October 11, 2010

Rough road

Good day/Bad day?: Bad

The weekend was ups & downs. Saturday was pretty good, and we enjoyed having Monika & Andy around and having the gang over for a fire. Sunday started out well, but then I was playing with Olive in the afternoon and I suddenly had to fight to keep my eyes open. Luckily Ben got home shortly thereafter, and Julie came to help out in the PM. I napped for a couple of hours and it didn't help. Having the same thing today.

I knew what "bone tired" was--I remember what it felt like when I was first pregnant and thought that was the most tired I would ever feel. Now it's different--I'll call it "blood tired", since that's where the chemicals are circulating. It really is insidious, and I hope it's better tomorrow, 'cause this sucks! And I'm more nauseous on top of it.

To make this not all whining, all the time, I'll say that Olive was thissss close to standing up alone and walking today. She really is showing that she wants to today, more than ever before. I predict by the end of the week. And she's found that she likes to rub her head on Punkin's back--very weird, but kinda cute.

October 8, 2010

It's complicated

Good day/Bad day?: not good, but good moments

So what normally is an 8AM-noon at the latest chemo day went all the way to 3PM today. Ugh. Little long. There were a couple of things going on. The suture line for my port has not really healed well and lookks to be pulling apart in the middle. Not great, but no signs of infection. They will keep an eye on it weekly, but it may warrant removing the port, not sure what the replacement options would be. I don't want to think about going through chemo without a port or line and putting my veins at risk. Hoping for the best.

The other thing I didn't mention here was I found what I thought was a swollen lymph node under my L armpit last week. Told the oncologist about it when I found it, and she examined it today, sent me down for an ultrasound. Not a node, but a fluid collection in the same area that they aspirated with a needle. Looked good, again no signs of infection, just kind of random. So it just wound up taking a long time with the suture line and the fluid. Then chemo, then turned green a couple of hours later as usual. Sorry--that was all boring, but I remind you that cancer is boring! Especially the waiting rooms. But we had a fun night with Olive, as much as I could keep up with her...

Tomorrow...MonikAndy come to visit! Yay! It's been too long.

Extra thanks for Mia watching Olive last night while went for one more window appt--sorry she was Cranky Olive! BTW, windows may be on hold, because the water heater is pooping out. I'm waiting for a pleasant surprise to balance it out.

October 6, 2010

Lamenting

Good day/Bad day?: Good

The title refers to me absorbing that another summer has gone by without much opportunity to partake in it--second year in a row! (Last year I was heavily pregnant.) Out of the last 2 years, I've gone to the beach and swam once. Sad. Not that I don't love fall--it's a delightful season. It just seems a shame. I haven't even gotten out to weed in the garden during that time.

But anyway, the day was good, then went out to a lovely dinner with friends (thanks to Julie for sitting!). Tomorrow morning, acupuncture and then work...

October 5, 2010

Business as usual

Good day/Bad day? Good

(Except Olive was really cranky in the evening...after being up at 4AM and not getting back to sleep for 45 min. Ugh. Then for some reason I couldn't get to sleep again--which is not ever my issue.) Cross your fingers for a full night's sleep!

Feeling better with the cold thing except one nostril alternates between plugged and runny. I am no advocate of antibiotics for every symptom, but I take them 2 days a week as part of this clinical trial. Apparently there is a slight risk with this regimen of PCP pneumonia, the same type that takes advantage of immunocompromised HIV patients. Don't you love this stuff? So the abx are meant to prevent it. So I'll take them.

After my rhetorical questions about baldness yesterday, I've decided to largely go bald at work. I have a hat or 2 on hand. So far all feedback has been positive, though I don't know if anyone would direct the negative to me.

BTW, I don't think I ever told you, but Olive's going up the whole flight of stairs. Easily. She has been for a while, and now she's getting fast!

October 4, 2010

Betterish

Good day/Bad day?: Didn't get worse!

I took the AM off, took a good, needed nap, and woke up...not ready to face the day and I was very ready to take the rest of the day off. But then I mustered up some gumption and went in for a few hours. Glad I did, because I actually made some mental progress on a few things.

So, this is all my own thought process and nothing proposed by anyone at work. My debate right now is about going bald. Pros--I am totally comfortable with it, I don't have to get more scarves, I haven't bitten the bullet with the wig yet. Cons (a little trickier)--I work at a hospice, so how would patients and families feel about seeing me walk around bald? Is it professional attire when I have other options? Is is distracting for me to teach a class bald? I've got some thinking to do...

Down & Out

Good day/Bad day?: yesterday was bad. Today?

Sat went along pretty well as Saturdays go, and I felt well enough to be a bowling spectator for a little while that night. Thanks to Kathy for all the help!

Yesterday I started coming down with some sort of upper respiratory thing and was tired and icky. Gotta call in to the MD today and make sure I don't need to do anything else, because I've got swollen nodes, too. But no fever. But I did have a good breakfast out with Val before I felt like crap. Wish me luck.

October 1, 2010

Round #6 (of 15, and then 8 more!)

Good day/Bad day?: Eh

Chemo first thing in the AM. Thanks to Julie--she & Ben have been my chemo buddies every week so far. Not because it's traumatic and they have to wheel me out, but it's nice to have someone around during the waits--BORING! They even got rid of the art cart. Just when I was going to make everyone magnets... I just wound up feeling more heavy-headed right after this treatment than the last rounds. Quiet day since.

Getting used to the head, and Olive & Ben weren't afraid of me, so that's good. Thanks for all the nice feedback on it! I wore a hat to chemo to start because there was a chill in the AM, but then I went without/bald and really don't care that much. I've said to other people, I'm amazed that almost all people wear their wigs to chemo--it seems the one place where it shouldn't matter. But everyone has their line in the sand, don't they? Not sure what mine is yet.

She does not want what she hasn't got