what's one more lymph node?

i met with the radiologist yesterday ahead of my next stage of treatment, which is 25 sessions of radiation.

well... most likely 25, said the radiologist.

'what would change that?' i asked.

he then told me how the PET scan i took way back when showed some 'activity' (activity equaling cancer) in a lymph node near my sternum.

uh? what? how is it possible that i've been to an umpteen number of doctor/surgeon/chemo/nurse/physical therapy/social worker appointments since that PET scan and no one mentioned that lymph node to me until today!?  (alright, i'll let the physical therapist off the hook for that one.)

so... ugh.  one more lymph node.  from what i can tell, from how he explained it, it's a lymph node within the region of the breast, so it's just a part of my cancer's 'regional' spread.  from what i can tell, it might put me in a slightly worse category of stage 3.  when he said it to me though it was like being forced to take a step closer to edge of cancer cliff, but really, i've been that close all along, i just didn't know it until yesterday.  and really, it's not such bad news.  it doesn't change how i've been doing since my diagnosis, since that PET scan, since two minutes before he told me and yet, there's something about getting cancer news... when it's anything less than great, it sort of feels like cancer scored a point and you got a punch to the gut.

so how would that lymph node change the 25 doses of radiation i'll get?  well, sometime after the new year i'll go in and have a CT scan.  if that area shows up on the scan, i'll be the lucky recipient of some extra radiation.  the idea of the CT scan has my mind spinning fast.  it's not the lymph node.  i don't want that to be there, of course, but i really don't want something worse to be there.  and there's no reason something worse should be there, save for my statistical proximity to that cliff, but the odds weren't even with me to get cancer in the first place, so, i'm feeling a little snakebitten.  and i've never gotten over this tight feeling in my chest... so i think a little about my lungs... but i hope that's just stress.

so, i can't leave you with such a downer blogpost.  i can't leave myself that way.  honestly, nothing bad has happened to me, save for the obvious cancer diagnosis, but that happened over six months ago, so that's old news.  it's nearly christmas and i'm so excited for that.  i think santa's going to bring us a slackline!  if you don't know what that is, go to youtube and type it in.  i have high hopes for henry.  he already shows great potential in the fearless, stunt, and hard head departments, so i figure all he has to do is work on his balance.

also we're going to vienna!  we're going with greg's parents.  his dad's here now and his mom gets in on thursday... just enough time to unpack her bags before getting back on the plane.  the physical therapist... that blameless one i talked about above, said it's so american to just pick up and leave like that for a few days, like it's nothing.  probably it is, but why not?  we have a few days right before christmas, we're in europe.  i can't say the weather will be any better, but the food will be different and the christmas markets, the music, the white horses... it'll be good.  maybe i'll even take some pictures and put them up on the blog!

and if i don't say it before then, merry christmas, happy holidays! life is good, that's why we love it so much.

eight minute update

what can i write in 8 minutes?  because it's 4:52 and i'm determined to start dinner no later than 5 p.m. and i'm determined that it will contain jerusalem artichokes because they are stacking up in the fridge and can no longer be ignored and i'm also determined that william will help me make dinner.  william who is currently watching a dinosaur documentary on netflix because his new career goal is to become a paleontologist.  (no longer a miner, he says.)

well, so, here goes... in 6 minutes now:

i finished up chemo.  did you know that?  surely you did.  i got some swelling around my eyes as a chemo going away present, but that's been gone for a long while now.

i had surgery.  did you know that?  probably you did.  they weren't brave enough (in the words of my surgeon) to simply go for a lumpectomy, because of the size of the original tumor... somewhere between 7-11 cm... and also that it had spread to surrounding lymph nodes.  at the same time, they don't do double mastectomies here, unless maybe you happen to have cancer in both breasts.  so, i had a single mastectomy.  any reconstruction i might choose to have does not happen here until a year has passed, so as to ensure everything's healed first.  so, for now, i'm becoming an expert in stuffing my bra.

i got my pathology report yesterday... the tumor was down to 7 mm at the time of surgery.  5 of 16 lymph nodes which were removed had had cancer in them, though two had no cancer by the time of surgery and the other three only contained single cancer cells... (from originally being at the 'macro metastases' level, so thought the surgeon).

and we've had so many good helpers here!  my dad and my stepmom, my mom and my aunt, my friend carrie who managed to put meals in our freezer and get her two cute little jet lagged children to sleep each night!  thank you, all of you!  we so appreciate it.  and now we are four and we are loving being four again, despite the dishes that don't magically disappear after dinner.

and how i feel?  good!  the surgery never really got me down, either mentally or physically.  but i certainly feel that i'm waiting on some of my energy to come back from me.  i can see why it would be scared away and it's not all done yet, this cancer treatment.  sometime after the new year i have radiation to look forward to, and i've begun taking tamoxifen, a hormone-blocking drug, which i can stop taking around thanksgiving 2023.  so... that will be a good thanksgiving!

well now, it's 5:03.  i have so many pictures, but no time.  dinner must be made and then eaten, little boys put to bed, dishes done...

energy

there's something to be said for the energy one gets from taking steroids.  i get them each time i have chemo and then taper off of them a few days after.  this time around... my final round of chemo... i ended up with two swollen eyes... a little going-away present from chemo i guess, and so i had to go back on steroids to try to treat that problem, and whether or not it helped, i can't say, but i took them dutifully up until yesterday when i decided my eyes (eyelids to be specific) were nearly as good as they're going to get.  in turn for this i've also returned to realityland when it comes to energy.  it is pitifully low after eight rounds of chemo and so i find myself sitting here having spent up all of my internet time-wasting capabilities and yet unwilling to move from the couch (except that i have an oncology appointment in an hour and so i'll have to move).  so, because of that, you get a blog post... whoever the you's are that still check.

but this blog post will really just be a way for me to encourage you, if you are feeling inspired to do a good deed, to donate to a little fundraiser i have going for a fellow mom with cancer.

here is the link: http://www.youcaring.com/help-a-neighbor/ginny-and-geoff-s-mini-madison-vacation/102381

as you can see, we are already so close to reaching the goal!  thank you for checking it out and thank you, thank you if you donate or if you already have!

as for me, friday will come along and i think i will be really curious to see how it feels to NOT go to chemo that day... and what will saturday feel like... and sunday... i will relish in any day from now until next tuesday (when i have surgery) that feels normal.  so i'm hoping to get my energy back, for a few days at least!

five for round seven

i'm sitting in a coffee shop in roskilde.  the only one in this town... maybe all of denmark (surely not) which is open before 10 in the morning.  i had my blood taken this morning.  a last ditch effort to see if i could have my chemo today.  my white blood cell count was too low yesterday.  at 1.37.  it needed to be at 1.5.  from what i can tell with my shoddy internet research, these are both very low numbers... the norm being somewhere between 4-10.  so... i went today just hoping and praying and taking maitake mushroom pills and papaya extract and vitamin c and b vitamins and whatever else i could think of, for that little boost that would keep me on schedule, that would make my brother's five day visit, which is starting in one hour, all the more helpful.  that would make yesterday's pre-test result realization that i will be done with chemo in three weeks, (THREE WEEKS!), all the more likely to be true.  i waited here for the nurse to call me up and give me the news.  when she called and told me the counts were good enough to go forward today... ahh!  music to my ears.  when she told me the number today was 5.0, i thought i'd misheard yesterday's number.  but no... it was 1.37 yesterday.  and it's 5 today.  wow... i am amazed at the human body's resilience.  throw what you will at it, give it cancer, give it chemo, give it fevers and the flu and bad hospital food and there's still some part of it that wants to get better. that works to get better.  to function like it was meant to function.  oh... that's a wonder.

so ten minutes now and then i should leave to get started on my injection of benadryl.  did i tell you that last time i had a rather common allergic reaction to this new (or not so new now), to this second chemo med.  i was saying something to my sister and brother-in-law and about to take a breath after a little laugh and sheesh, it became hard to take a deep breath.  and apparently my face became flush in about 1 second.  all symptoms of the allergic reaction.  so now i get to have a little benadryl kick (not so much a kick as a snooze fest) before the last two rounds.

well... that's it for now.  thanks to all who took a little time to think about my white blood cells yesterday.  they got the message!

sunday

so hi there.  i haven't written in a long time.  for so many reasons.  for one, the task seems too big... the longer i go without writing, the more there is to write about, the more daunting sitting down to a blank screen seems.  there are people, so many people, who have been here to stay with us, who have helped us in so many ways, that i want to thank and give due credit to somehow through a blog post, but that too, seems like a monumental task, because how exactly can i adequately thank them for putting their lives on hold to fly thousands of miles over here to do things like clean our bathrooms and feed our children and pull the burley around town when they haven't even been on a bike in years... but they all did it... greg's parents, my mom, my friend andrea and her husband, forrest, and their son, leo, who endured multiple bites from henry, who is still learning how to appropriately express appreciation, my sister, who endured two 10 hour plane flights while in her second trimester of pregnancy, and my brother-in-law.  and it doesn't end there, because next comes my brother, and then my dad and step-mom, another friend... then maybe my mom again and my aunt... and probably greg's parents again.

and then there are the cards, the gifts, the care packages, the borrowed cars, the ride to the hospital when i needed it (jean) and the ride home (bo), all the thoughts and all the prayers...

what can i say other than thank you and i owe you one?

and then there's the fact that my thoughts are always changing on this subject of cancer, living with it or living around it, and the idea that you don't really want to hear my thought of the day on this subject... so then i don't write for that reason.

i'm not sure why i decided to break the drought at this moment.  it's one in the afternoon on a sunday. greg and henry left to drop william off at a birthday party and i'm essentially stuck on the couch, realizing that cancer and chemo are all fine and good and more or less manageable until i get sick.  at least, i assume it's worse than if i got sick without having cancer or being on chemo (probably more the latter than the former).  of course, getting sick on chemo automatically becomes worse because when you get a fever, they make you go into the hospital.  so early thursday morning was the second time since i've been on chemo that i got a fever.  the other one was about a week and a half prior.  when i went in for the first fever, they kept me around for a couple of hours and then let me go home (although they did offer that i could eat dinner there or spend the night... i politely declined).  when i went in at one in the morning on thursday, i sat in the e.r. room for a few hours with greg and then the doctor convinced me that i should just stay the night while they waited for the rest of the blood work to come in.  it did take some convincing because to me it felt like, once they had me there, they were going to keep me there... and it's true... they did keep me for another two nights beyond that first night.  before that, i'd never spent the night in the hospital... not when i had children... not even when i was born... i was resistant to the idea.  when i avoided it during that first fever it felt just a little bit like a personal victory.  when i didn't avoid it the second time... it felt a little bit like the opposite.  and i know what you're thinking and what you might tell me.  yes, i already know.  i know, i know, and i know, and that's why i didn't sneak out the back door.  it's not about holding the record for fewest number of hospital stays.  and even though the jury's still out on whether i even need the antibiotics i've gotten, you are not allowed to take chances with cancer.  there is no debating with this disease.  it holds all the cards.  damn it, cancer!

so when i get back the energy to get back up off the couch, perhaps our lives will return to normal long enough for me to imagine what normal feels like, before the next round of chemo and meds begin again.  but then, of course, there will only be one more round to deal with after that... so... once again... when i really think about it, i shouldn't be a grump... this part of the treatment is nearly over and it hasn't been that bad on me overall.  i haven't even lost all of my hair yet, and in fact, it's begun to grow back.  (we'll see if it lasts the final treatments.)

numbers

hey!  one more chemo round done.  three more to go.  at five treatments, i suppose that means i have officially turned the corner toward the chemo finish line (which is still a ways off. assuming things go as planned i will be done with chemo toward the end of october).  i'm on a new med for these last four rounds.  i guess, following the law of diminishing returns, chemo meds (or at least the ones i'm getting) begin to lose their potency on the tumor after about six rounds (though the crummy side-effects only increase), so rather than keep me on the meds i was on for the first four rounds, they give me a new start essentially, with a new med, though the cumulative effect (side-effect-wise) of chemo doesn't go away with a new med, so i could very well continue to be more and more worn out with each round.  however, this med isn't supposed to produce much in the way of nausea, which was one of the least pleasant (though rather mild given the good anti-nausea meds they have these days) side-effect from the last drugs.  this new med however, will give me lots of good joint and bone and muscle pain, though the silver lining in that is that if i make the good choice, i'll be able to attribute that feeling to the chemo and keep my paranoia in check that the cancer's metastasized to my bones.  there is something of a safety-net feeling while you're on treatment.  i start to get a little nervous toward the end of my three-week period that the cancer's revving back up again.  as much as i hate the feeling chemo gives me, as much as it's not good for me in some unknown number of long-term ways, it's a relief to know it's in there and presumably killing some huge number of cancer cells.   

and the news from my oncology appointment yesterday was encouraging.  when the doctor felt the tumor (as accurate as that might be) he said he thought it was at about 3 cm (by 2 cm by ??cm).  this down from it's highest point at 11 cm (based on the mri, which may have overestimated) or the first oncologist's measurements of 8 cm.  and there we can already see the diminishing returns, given that after two rounds it had decreased by about half.  so thank you, thank you epirubicin and cyclophosphamide for doing your job, and may you go on your way helping others and i will go on my way and we will not look back and i'll visit with taxotere for awhile and i will take my bone marrow booster and my flucanozole and my steroids to try to stave off the count drop and the swelling and the yeast infections it has no choice but to want to give me.  and i will be happy doing this.  i'm happy, because yesterday the doctor used the word 'marvelous' to describe how well he thought the tumor was responding to treatment, and he gave me his own, tailored-to-my-case, in his own opinion, off the top of his head, no data included, five-year survival statistic of in the 70's to 80's percent, which sounded quite alright to me.  he didn't throw it out unprompted mind you. he didn't say mine was the most amazing case he'd ever seen and that he should retire right then and there on the highest of high points in his career (he is only in his 40's, but how cool would that have been?!).  no, no-- after i made it clear to him with my begging to give me a number, any number, higher than zero please, and, if at all possible, something over fifty, he gave a long talk about how the numbers don't really reflect a real person, how they're already outdated, how they don't fit my specific and somewhat unique (in that I'm young, in that I have (so far) had a good response to the chemo, and in the fact that I'm getting chemo before, rather than after surgery) circumstances, and how the numbers only say whether a person lived or died at the five year mark and not whether they died of cancer or old age or from being hit by the phantom bus.  he did that tiptoeing around until i convinced him that i really did still want a number to stick into my head.  that it would make a difference in my outlook-- that to know i have a fighting chance and that not all stage 3's eventually, whether it's tomorrow or 20 years down the road, turn into stage 4's, to know that I might never have to go through chemotherapy again or have somebody tell me I have cancer, again... just to know there's a chance that this really could be one year out of my life and never again and that i might, just might live to be 91... 

after that, he threw out the numbers, and i took them.  

and i need to remember that i didn't just walk out into the street one day (not yet at least) and get hit by that phantom bus.  i walked into a doctor's office in a country with excellent health care and was told i would get the most up-to-date treatment for a curable cancer.  i absolutely cannot complain about any of it.  

4 rounds and a sound

it's been so long since i've posted you probably thought i succumbed to the cancer.  no, no!  still here.  still doing well, if it weren't for the blessing in disguise which is chemo.  i had my fourth round today.  my fourth of eight.  and eight, i have decided, is all i'm ever going to need.  this requires vigilance on my part and probably some powers i'm humanly incapable of possessing.  so a decision without a lot of teeth in the enforcement department, but as they say, where there's a will, there's a way, so i might as well have the will to get this cancer over and done with and out of my body and then never the twain shall meet again.  there, i've said it. that's the decision and i'm not even going to think about how long never again seems from a 33 year old's perspective.

so, for posterity-- round three: round three was a bit tougher on me than the first two.  i didn't get off the couch (much) for about four days.  then i was up but worn out for the next two and then took a gigantic nap the next day-- friday.  so that was week one.  in week two, beginning on saturday, i developed crummy canker sores on my lips which lasted for a good eight days and which had me eating two-thirds of my meals from a straw (not the same straw all eight days mind you).  fortunately, my weight held steady, but i'm also thinking i consumed my yearly allotment of lidocaine in those eight days too, so maybe that's why.  and yet, when the nurse said they might have to adjust my dose downward to try to prevent it from happening again, i did put up a bit of a protest.  whatever the maximum dose is, i want it.  even if it means more canker sores, mores straws, more lidocaine, i'll put up with it if it ultimately means my decision about never again is going to mean something.  but well, i get to (hopefully) live without the canker sores, because the doctor ultimately did decide to lower my dose a bit (25%).  this is my last round with these meds so in the end i did get most of it and next time i get a new med with hopefully the maximum dose for all four rounds.  also apparently there is no evidence to suggest that tailoring the dose to meet an individual's need, and not just to their body mass (which is how the dosing is figured initially), affects the ultimate outcome.  so, it's all okay.

well... enough with cancer.  here are some pictures of life that goes on...

i'm sure i don't need to tell you that these are not in chronological order, especially as we were here, at tivoli, yesterday...