Chemo, hair, wigs, and other updates

Jill's chemo went well today.  Tiff and Mary Beth sat in for part of it and then I came at the end (the girls had flights to catch).  Jill was told by the oncologist that she does not have to live in a bubble, even the week after a treatment.  She needs to be smart and avoid sick people, listen to her body, etc.   She is supposed to ask her normal oncologist (he is on vacation now) to make sure, but that is good news.

As always, the nurses and patients at the cancer center were so nice.  It was super busy today.  39 infusions they said.  As they said, some docs and nurses take off time at the holidays, but cancer does not . . . so the treatments do not.

She also had her wig fitting today.  She found a human hair one that will work great.  Her stylist, Tiffany, has the wig now and will color it to match Jill's current hair.

Hair today, gone tomorrow (or soon)

Jill's hair has started to fall out.  Not in big clumps yet, but it is speeding up.  We were told it would happen by or with the 2nd treatment (which is today).  We will be taking it off this weekend.  I will get some pics tonight before.  And then some during.  I am hoping to first hone my stylist skills by giving her a trim.  Then a mohawk.  Then take it all off.

We are trying to be as light hearted about this as we can.  I am sure it will be tough when it actually happens.

Its been a long December, someone once said . .

Adam something or the other . . .

At any rate, the daughters spent the night at grandma Louise's house last night . . . and we got the call at 6am this morning - grandma is sick with the thing we all had last week.  Ugh.  Sorry mom!!

On a positive note, Jill was able to go out last night with her mom, her sisters, and 3 of her good friends (two from out of town).  She had a wonderful time I am told and I am happy she was able to do that.

Tomorrow is chemo, so we will update soon.

Everyone - start bugging Jill about posting on here herself.  :)  It would be a nice addition.

Today was far more eventful than we would have liked

I went with Jill for her bone scan today.  We had an early appointment . .  that turned out the early apt was to get the nuclear injection.  Then we had to come back at 11:30 for scan.  I went to work and met Jill back at that time.  The scan took maybe 30 minutes and we decided to get lunch.

At lunch, Jill got a call from an unknown number.  It was the tech.  the radiologist wanted some follow up scans to check something.  Needless to say, the rest of the lunch was not as upbeat.

We went back and had the scans.  Turns out that the original scans just did not look that good - quality wise.  The new pics were better and the radiologist came and told us in person her bones are clear.

At any rate, it made for a tense hour or so for Jill and I and our mothers.

Ready to a semi-normal week

We all had a nice day today.  I was able to get out the door and do our weekly grocery shopping before 8am.  I was able to go to walmart and have it be essentially empty.  Yeah.

Jill took the girls to her sisters to play for a while.  Holly is spending the night there.  I got a run in, which was so nice.  Lauren came back home and begged me to shoot her over and over with a nerf gun.  Done.

Then the Noel's brought over a very nice dinner.

I have been working on blogs now that this blog has helped get me motivated to learn wordpress a little (the software that runs this blog).  Not to shamelessly plug myself, but I have a personal blog @ blog.golightly.us.  And a fat loss in 2010 blog @ fat.golightly.us.  Feel free to check those out from time to time.  They will show different sides of me, so you might not like me as much as if you only read this blog.  ;)

I am going to try to work a full 5 day week this week.  Yeah.  I need it mentally.  Jill is going to have a bone scan tomorrow and then go into work for a little while.  She has some friends coming in from out of town this week too.

Christmas evening . . . for now, all is right with the world

I am feeling better.  The kids have been playing with toys and games all day.  We are currently playing Toy Story on wii (a new game we got that is like the Toy Story ride at Disney) as a family.  Even enjoying a beer.

Jill slept this morning, but is feeling decent.  The girls are great.  I am probably 90%.  It is Christmas.  There is snow on the ground.  Going to have dinner soon.

A lot may happen in the next year, but tonight all is okay and we will take that.  Truth be told, a lot may happen tomorrow to any of us, so it is good to just accept the right now every now and again.

Merry Christmas.  God Bless.

Merry Christmas, morning report

Lauren was up a bit before 6 and we were opening presents by 6:20 or so.

Last night at my parents was wonderful.  Gifts and time with family.  Yeah, there was wonderful beef tenderloin and fine wine . . . but my stomach could only handle chicken and noodles.

It was great to spent some quality time with my family.

I am feeling much closer to normal this morning.  It is a festivus miracle!   The kids are playing with their new gear right now.  I am enjoying a latte.

Merry Christmas all.

Christmas Eve update

Well, Jill seems to have a lot of pep in her step this morning.  Yeah!  The girls are back to full strength too, or at least close.

I am better, but still not great.  I made a mistake having pizza last night and was up for a few hours.  Ugh.

The real bummer is my mom makes an insanely good Christmas even dinner that I will probably barely touch tonight.  :(  And my brother wanted to meet at Sullivans for lunch and drinks (and he would have probably picked up the tab).  BOOOOOO.

I will get some pics of Jill and the girls in their matching haircuts over the next few days and get them posted.

Lastly, thanks for all who have subscribed to the blog and have provided me with such nice feedback.

The results of Jill genetic test are in, and not good

Jill has tested positive for BRCA mutation, which amounts to her having the breast cancer gene.  In basic terms, she was genetically predisposed to have breast cancer.  If she were to go through treatment as planned but keep her breasts and ovaries, there would be  like a 60% chance of her getting breast cancer again.  We were told up front if she tests positive for this, it would be a double mastectomy and the removal of her ovaries.  While we have yet to meet with the breast surgeon, the oncologist and the geneticist after learning of this, I am sure this is the route we will take.

FYI, The testing for this gene is expensive - like $3400.  There is only one lab that can do it as they own the rights to it, which seems nuts to me.  However, a quick google says that this might be currently being overturned due to a lawsuit.  Seems to me that making this test easier and cheaper would benefit people.   At any rate, here is a website for more info http://www.facingourrisk.org/index.php

We will meet with the genetic folks next week and will know more.  Like what does this mean for our two girls? Jill's siblings?  Or Jill's mom?  Jill's nieces?

Feeling better and getting ready for the holidays

Jill is doing well.  The girls are back to normal (fighting with each other 2 days before Christmas . . . ).  And I am starting to feel among the living again.  I went and got a latte from starbucks this morning  . . . my stomach did not love it, but my 3 day caffeine starved head sure did.  Now trying to get hydrated with a slow but steady stream of gatorade.

I am going to take the girls to get their hair cut today.  Holly will be making her 2nd donation to locks of love (or similar) and both will be getting a shorter haircut like their mom currently has.

Jill's blood work . . . not great

Jill had her blood drawn today as part of the normal course of treatment.  This is done to see if her white blood cells count is high enough (and some other stuff).  Turns out her white cells are low and something else is dangerously low.  Not totally uncommon they say.  What this means is that she is going to have to limit her exposure to people.  Probably will not be going to church.  Probably will have to work from home.  No visits to the mall, etc.

This could change of course, but that is what we are looking at now.  I guess I should get some surgical masks for visitors.

My guess is that this might get better.  I mean, she is just recovering from something that has kept Holly and me down for 3 full days.  But only tests will tell us as the weeks go on.

Again, one day at a time.

Getting healthy . . . slowly

First, as this is a Jill-focused blog, Jill is feeling probably 80%.  She went into work for a short bit to take care of a few things.  Now she is at St.V's to get her weekly blood draw and while she is there she is going to take a bag or two of fluids via IV to help get her back on track.

Holly is probably 90% back.  On a side note, if there is a better sick kid than her, I would have to see it to believe.  She is amazing.

I am about 60%.  Ugh.  This is really quite bad.  Unlike Holly, I am not great at being sick.  It is 100x worse when everyone is sick and well, you wife is battling breast cancer.  You cannot sit there and ask everyone to take care of you.

Today I have cleaned the house to try to kill off this bug so that if anyone comes over they are not doomed to sickness.  Some lysol wipes & spray and elbow grease helps.  I also opened a window in our bedroom as it smelled awful.  In addition, I have the home HVAC system fan on high as we have both an electrostatic airfilter and a dual bulb UV filter.

I will be out of PTO as of this week due to this bug, but oh-well.  I can go negative and I get a decent amount at work.  And I think the total number of days I will need for vacation in 2011 will be less than our past few years.

Again, thanks to all for the kind thoughts, offers of help, etc.  I do not know what we would do without our family and friends.

Lastly, if you see or talk to Jill, you might tell her to read this blog.  I hear it is good at times.

sick update

Jill seems to be much better.  I still feel quite bad, but started this about 12 hours later than her.  Holly is just so so.

a really crappy day, made better with some help

Jill, Holly and I were all sick over the past 24 hours.  Holly started first, then Jill, then early this morning.

Jill's mom pam came over around 6 or 7 and helped out so much.  She cleaned up, took care of Jill and Holly and entertained Lauren, who got her sickness out of the way a week ago.

Pam took Lauren home with her and she is going to spend the night, which helps a lot.  Lauren was just bored and wanted attention that would could not really give.

My mom came over and helped out to.  Made me feel better just hearing her voice, even when I am nearly 40 years old.

My stomach feels rough, but I seem to be keeping stuff down at the moment.  I am getting ready to go to bed and am moving very slowly.  I am hoping I do not have to do any more puke cleanup throughout the night.  But if so, I am hoping I can dig deep and do what I need to.

This was clearly very bad timing with Jill going through chemo and me having to really watch my PTO days . . . but if life were always awesome, it would get boring.  This night will make help motivate me when Jill is puking from chemo.  How being nauseas basically shuts you down.  And all of this will make the end better- when Jill is better and we are on a family vacation down the road.

Thanks to all that are thinking of us.

Yuk

Jill is still totally laid up. But no real fever and has no puked so hopefully she is not getting dehydrated.  Holly is still down too. But only has to mild fever and has not puked since 5am.
I have slept some, but have to get up often to use bathroom. Just had some crackers and gatorade.  Pam has been here since around 6, which has helped a lot.
Lauren seems fine, but she has this last week

Rough night leads into rough day

Holly puked again around 5.  I have slept very little and think I got this bug.  Been in the bathroom too much and my stomach feels like crap.  Jill is still laid up with a headache and nausea.  The real questions with her are A) is her nausea from this thing that Holly has (and other people that were with us Sat and Sun) or is it the chemo day 5?  Or both.  B) is her headache a normal hormone induced migraine or is it the chemo day 5?  Or both?

Soon we will call in reinforcements to help with Jill and the girls and see if I can get some sleep.  Of course, if I am getting what Holly has, I am not sure how much sleeping I will be doing.  Ugh.

Easy like Sunday morning?? Well, Sunday night sucks

Jill started to feel worse as the evening went on.  More nausea and a headache.  That has progressed into puking and a migraine.  Holly did not feel well before dinner and had little to eat (but sadly, still some).  At 11 she puked.  A lot.  And missed the bucket.

So I have been cleaning up puke, starting laundry, and trying to comfort 2 of the most important ladies in my life.  Not going to lie, I would prefer to be sleeping and them feeling fine.

I am hoping for no more updates overnight, which would mean things continue to be less than ideal.

Easy like Sunday morning

Jill and I both got a good night sleep while the kiddos stayed at grammy pam's last night.  Then everyone went to church this morning.  Jill is feeling ok, just tired and still in a bit of a fog.  We are watching the colts play now.  Everyone had a good time last night at Pam's.  Gifts were exchanged, stories told, and much love was in the room.

Amanda Lawson brought us over a big spread, to say the least.  Thanks!  We will be eating that for a few days.

So far, so good . . . and we are thankful for it.

Xmas with family

Jill's family is all in town and we are opening gifts.  Jill is feeling fairly well. Her and I both had a good nap this afternoon. 

Saturday update

Jill, with help from her siblings, mom, and sister in law, was able to open all her shower gifts this morning.   WOW!!  So much stuff and so much love.  Thanks to everyone!!!!

Jill is feeling okay, but is worn out.  She is laying down for a nap as I type this.  She comments that she is 'in a fog', which we are told is a normal side effect of this process.  They call it chemo brain.

We are planning on opening Christmas gifts tonight with her side of the family while her brother is in town.  Jill already has enough stuff from the shower to fill the van . . . so tonight will require another trip.

Greg's $.02, 12-17 edition. Key word = Relentless

My new mantra is Relentless.  Jill's treatment plan and meds are relentless.  Our battle against cancer is relentless.  Those around us are relentless in their love and support of us.  My need to be Jill's rock is relentless.  The need for me to pick up the slack around the house and in our personal life is relentless.  My need to work efficiently and effectively while at work is relentless (and yes, work is down on my priority list, but still is import to me).  My love and support of Holly and Lauren is relentless.

After all, cancer is relentless and thus we have no choice to be relentless.

Now for a normal Greg blog entry:

I  have been picking up several tasks that Jill normally owns.  But I have scored a #fail on several things too.  The recycling did  not make it out today.  The Advent house did not have anything in its door this morning.  But last night and this morning I took care of the kids and got a lot of things done, albeit in a much more crazy manner than Jill normally does.  Over the weekend I will do a brain dump to get all things from Jill and get them on my calendar/GTD apps.  What night is homework, what night is spelling test, etc.

Friday 12/17 update

Good morning all.

So far so good.  Jill has been tired and at times nauseous.  She has been sleeping fairly well, albeit off and on.  usually somewhat early at night and then is up part of the night.  She is learning what meds to take at what time to stay on top of this.

That said, if the predictions are right, her worst post treatment days are still ahead of us.  One day at a time is all we can do.

We are learning the ins and outs of day to day life with Jill at less than 100%.  We are starting to accept help from others and it makes a great deal of difference.

New calendar is live to help us with all kinds of stuff

the link is now at the top of the page.  Yeah.  thanks To D and Mary - YOU ROCK.

Well, just to add to the fun . . . Jill got rear-ended - BUT IS FINE

She got rear-ended while pulling into the facility to get her shot today.  Ugh.

She is fine.  Minimal damage.  Nice guy who hit her (might be a patient there to she said).  She got all the info.

12/16 update

Jill fairly tired last night and was able to get some sleep as of about 7pm.  She did get up for a few hours in the middle of the night with some mild pain.

This morning all seemed okay until I made her some eggs (per her request) and one smell sent her running to the bathroom.  After a few minutes she was okay.  She took some of her anti-nausea meds after that.  Right now she is driving to St.V's to get a shot that will help with her white blood cell count.  This will always happen the day after her treatments.  Hopefully her slow drive (weather) will not be too bad.  She does have good winter tires on her car, which helps a lot.  On that note, my dad got her some things to put on her shoes that are like tire chains, only for shoes.  Once she gets a bit more weak, these will be nice if the weather stays crummy.  Lets all thank my dad for those.

More later.

Breast mri update

Results are what we hoped for. Cancer only in two areas we knew.

Treatment 1 is done

Went great. Jill feels fine for now. Wonderful nurses!!

Port is attached

Very little pain. Yeah.  Very experienced nurse at doing ports.

Update from oncologists office.

First,  all of jills tests that are back show no cancer anywhere else in her body. The breast mri is not back yet. And she will get a bone scan in the next week or so.

We are in chemo room awaiting start of treatment

She is going to get port attached now

After 12/14 shower/open house

I wanted to get this posted tonight . . . but it will be short of details.  I will update tomorrow in a more complete manner.  Tonight was simply amazing.  The number of people, their support, and their gifts were amazing.  Just blows you away when you think about it.  There was a signup sheet to offer help (food, taking kids around, etc) that was a wonderful idea and so many people signed up.

I want to thank everyone who came.  I know many more who wanted to come where not able to.

I will get some pics up by the weekend.

12/14 update

All of Jill's appointments went well yesterday and today.  She has a port now.  She has been to the geneticist.  She has had a breast MRI.  She has had a full body scan.  We do not have any results for any of these, but her list of appointments for testing are done for now.  yeah.

Tonight is the open house/shower for Jill, which should be a good time.   We of course would rather not have the reason for it, but since we do this is a wonderfully nice thing.

Well, tomorrow is the first chemo treatment.  I am sure Jill will be nervous tonight, as will I, but I know we are both very glad to start moving forward with the treatment.

Thanks to all

Every day we continue to be amazed at the support we are getting.  It really is beyond our wildest dreams.  Many people have contributed to Jill's Samsung Tablet, which I am guessing she will use some starting today.

We are going to get our first meal this Wednesday evening.

We are in the process of figuring out how to best coordinate all the offers of dinner and other help and will have something in place soon.  This should make it easier for those who want to help.  And it should make it easier on us as well.

On a personal note (again, this is Greg typing this) - I appreciate all the kind words about my posts and this blog in general.  I am struggling internally hoping I can live up to the hype I have already received.  Jill has always been the much better person of us two and has always been the selfless one.  Me taking care of her and the family as needed will be a change for me and I know I will bad days where I struggle.  If you could pray for me such that I can be strong and put the family ahead of my own life., that would mean a lot to me.

Monday morning update

Jill left early enough and made it to St. V's on time despite the weather.  Her mom is with her for support today as she gets a breast MRI, meets with the medical geneticist, and then gets her port installed.  Lets hope she is able to complete all these today in a timely fashion.  With this weather, I suspect she might have a long day ahead of her if places are understaffed or running late.

Jill tells the kids that her hair is going to fall out

They took it well so far.  Of course, like the rest of us, it is one thing for them to hear it and it will be another thing for them to see it.

But now it is fine to make comments in front of them about hair loss, etc.

We wanted to do this before the shower tuesday night.

Right now is kind of in between space

I cannot imagine what Jill is going through, but I know what it is like to be someone who loves her.  Right now is a very odd in between space.  I know what she has and the road that is coming, but on the flipside things are at times oddly normal.  The days are normal enough right now that I slip back into normal life from time to time, even if briefly, and then bam - it hits me that my wife has cancer.  Just stops me in my tracks, at least mentally.  There is good and bad to this . . . good in that I am able to do some normal stuff (worry about work, deal with a sick kid, watch my fantasy football team in the playoffs) and bad that I simply do not know how to make sense of this duality.  I know logically the best thing to do for me and my family is to carry on and keep things normal for the kids.  I need to stay somewhat focused on work for a number of reasons (to keep my mentally involved in something, to support my family and so on).  I need to enjoy things about every day life.  But until Jill is cancer free, this will be part of our lives.  Most waking moments.

Jill started her journal

last night Jill started to write in a journal.  The doctors recommended this and I too think it is a great idea.   I know from past experience, albeit dealing with much less stressful situations, that getting your feelings down on paper (or keyboard) can bring a great deal of peace.

Someday when the girls are older, this will be a very special thing that Jill and them can read together to understand what mommy went through when they were younger.

I too will continue to journal.

One thing that I am going to have us both do (not sure if I can get Jill to do it) is video journal too.  Easy to do here with a webcam on the computer.

trying to stay healthy . . .

Lauren started puking yesterday afternoon.  In addition, one kid and two adults who we were with on Friday night have had this.  Based on timing, we are really trying to keep Jill from getting this so as not delay any testing or treatment this week.  I would like to avoid it too, just as puking is no fun and I am trying to save my PTO as much as possible.

Jill slept in the basement last night so Lauren would have to come to me for assistance if she got up sick.  She sort of puked around 10 and then made it through the night okay.  Well, still woke up a few times for various reasons.  But overall, not too bad a night for me.  And Jill is still sleeping, which is great.

I am not going to lie, I am not quite ready to be primary for our kids at night and when they are sick, as will have to be the case when Jill is going through treatments.  But you know what?  No one in this house was ready for Jill to get breast cancer.  My road ahead is easier than hers.

New site info

I moved to wordpress to be able to do more things with this site and have more control over it.  I already have hosted sites, so this was easy to do.  In the near future I will add more features to allow everyone to share their support of Jill.

Friday/weekend update

GG

No new news to report on the clinical front.  Next week is testing and then chemo.

On the personal front:

I (Greg) was able to have a great talk with one of my brothers last night over a few beers.  It meant a lot to me.

Jill's sisters are having a 'Chemo Shower' for Jill next Tuesday night.  This will be an open house with some gifts to make her time in treatment better (like comfy clothes - and Jill does not buy herself clothes ever).   What a wonderful idea.

On the front, I got Jill a Samsung Tab (the google android version of the ipad).  She can read, watch, listen, browse, etc on it.  Should come in handy for treatment sessions and rough days at home.  She can read all the wonderful facebook and blog comments in bed.  Several people have already donated some money to me to be part of this gift.  Thanks much!

Tonight we are getting together with some friends and their families.  It is a group of people that do this every month or two and it will be nice to have a fun night with everyone.

The weekend is going to be a little busy, but should be fun.

Update

Will update about oncologists appt after lunch

sent from google android phone

After oncologist meeting

We met with Dr. Birhiray, the oncologist, this morning.  He really impressed us.  Answered questions, took time with us, explained things, etc.  We are very happy with our doctor selections so far.

he agrees with the course of action being - chemo, surgery, radiation and for the same reasons Dr. Schmidt.

Jill will have her first chemo session next wednesday.  The overall plan at this time is 16 weeks of treatment, every two weeks.  First 8 weeks (4 treatment) is the A treatment and the second is the T treatment.  I am not 100% sure on those letters being accurate or what they mean.  Will know more soon.  But the first 4 treatments will be around 3 hours each.  The last 4 will be about 6 hours each.  Ugh.

Jill will lose her hair.  We know that.  It will be hard, but she will get through it.

We have a big stack of RX meds to fill.  Anti nausea (like 3 varieties) and an anti anxiety med.  maybe something else I am missing.  I am sure Jill's pharmacist sister and brother in law will get a lot of questions.

They are going to put a port in her, which is like a valve into her vanes that can be used to draw blood and provide medicine.  If this were me going through this, I might see what would happen if I poured beer directly in . . . but Jill is a hell of a lot smarter than me.  We are not sure when that port will be installed.  it will be done by a surgeon.

Monday Jill is getting a breast MRI to know for sure if this is anywhere else in her breasts or lymph nodes.

Tuesday will is getting a CT and full body scan to look for cancer in other parts of her body.  On that note, the chest xray came back clean, which covers the lungs.  Yeah.  Tuesday she might go to the genetic testing place to find out if she has the breast cancer gene.  If so, that will impact her treatment down the road and will probably mean a double mastectomy as well as the removal of her ovaries.

As a side note - Jill and I made a decision that we are not going to have any more kids, so we are not going to go down the road of collecting her eggs.  Even if her ovaries are in tact, her age and this treatment would probably shut the door on that anyway. We thought about it, prayed about it and came to the decision together.  I am posting this just to put people's minds at ease . . . many cancer patients never think about this and then are sad they did not get an egg before they started - because they were never told.

On Wednesday, Jill will meet with the oncologist and then start chemo.  Her first treatment will be at 86th street at the main hospital due to scheduling.  After that, she will likely do them on Tuesday's at the breast center where all the patients will be breast cancer patients (as opposed to all kinds of cancer patients).  We have been told that 4 or 5 days after is the worst day as far as how she will feel.   The tentative plan is to do tuesdays so that the weekends will be when she will feel worst and can rest.  This will hopefully allow her to continue working, which is her desire.

In addition, we met St.V's nurse navigator today.  She is our go to for anything.  We have one with Riverview too, but now I am not sure Jill will get chemo at Riverview.  But things might change, you never know.

 

12/9 update

Just arrived at oncologists office. Early as usual. More info soon.

sent from google android phone

A little zen story

GG.

I read this several months ago and really it started to make a difference in my life at that point.  I think it is helping me quite a bit right now.  Here it is

A man walking across a field encounters a tiger. He fled, the tiger chasing after him. Coming to a cliff, he caught hold of a wild vine and swung himself over the edge. The tiger sniffed at him from above.Terrified, the man looked down to where, far below, another tiger had come, waiting to eat him. Two mice, one white and one black, little by little began to gnaw away at the vine. The man saw a luscious strawberry near him. Grasping the vine in one hand, he plucked the strawberry with the other. How sweet it tasted!

if you are asking what the . . .?, I sort of was too.  The book I had explained it as such:

the tiger at the top of the cliff is the past.  

the tiger at the bottom is the future (and to some extent death, which awaits us all). 

the mice are time - day and night - which prevents him from just staying there forever.  

The moral is to enjoy the moment.  He could have hung there and worried about the past.  He could have hung there and worried about the future.  No way to stop either.  Instead he enjoyed the moment.

 

This entire process will have highs and lows, regardless of the outcome.  I hope Jill and I, and our kids, and those around us, will enjoy every moment and not worry about the future or past.

12/8 morning

Gg

At st.  V's for testing.  Chest x ray and blood work.

sent from google android phone

After meeting the Doc . . .

GG

This will be long and disjointed post covering: our appointment, the doctor, next steps, our feelings, and telling our kids.

Short answer.  Jill has an aggressive cancer that would be called stage 2 as it is somewhere around 4cm in size and has traveled to her lymph nodes.  The doc is confident in a treatment plan of chemo, break, surgery, and then radiation.  Approx 7 months of treatment is the guess at this point.  We are confident in the doc and were impressed with the time he took with us and how he explained the course of treatment and the reasons behind it.  The kids know and at this point seem okay with it.

Long answer . . . this will be all over the place.  Sorry.

We had our appt this afternoon.  In a nutshell, we talked to a nurse at first who looked over the files.  She explained the game plan.  The doc would come in and talk to us briefly, then jill will take off her top.  Then he would come back in and do a manual exam.  Then he would leave to look at the films and test results.  Then he would come back.  This all took a while.  He confirmed both lumps manually.  When he came back he literally probably spent an hour with us.  Drew on about 4 pieces of paper with all kinds of drawings.  He answered everything, often before we asked it.  We really liked him.  Jill, Pam and I were all there and thought he was great.  We were there late enough that the place was closed and he had to let us out.

The tumor is aggressive, but we kind of knew that as it is a decent size and was not there a year ago.  And is has spread.  He made one thing clear - aggressive does not = outcome.  It does, however, drive the treatment.  

Tomorrow Jill is getting some tests to check to see if it is anywhere else in her body.  Well, lungs, kidney and bones.  

He explained to us that we know this cancer is travelling as it went to the lymph nodes.  

To treat Jill, the plan is to do chemo starting next week.  They are going to leave the tumors as they are, as they are needed to watch progress.  Basically, we need to see the tumors shrink from chemo.  This means that any place else it has gone (especially if they are too small to show up in the scans tomorrow) it will shrink and kill too.  We will get it tested in a month so see if they shrank.  The doc believes that it will shrink a lot even in one month.  If not, we will try a new mix of drugs.  

The tentative plan is chemo for 3 months.  Then one month of recovery.  Then surgery.  Then radiation.  If she test positive for the breast cancer gene, she will have a double mastectomy for sure.  If not, it will probably just be a lumpectomy on the one breast.

We have our first consultation with oncologist on Thursday.  More info then.

I am taking the next few days off to go with Jill. 

We told the kids and they took it much better than expected, but I am sure the worst is yet to come.  I think Holly took a great deal of comfort in being included and being able to be part of something as a family.  Lauren . . . well, she does not really get it, but that makes sense.  

Over the coming weeks and months I am sure we will have tremendous ups and downs, but for tonight we feel actually fairly well.  We have a great support group around us in family and friends.  We really like the doc so far and chemo will be here in Noblesville.  The other location of the oncologist is at the same place where our breast surgeon is, which is right where I work. That means I know people at all places we will be (from my time at Riverview and now at St.V's).

We are going to try to make the best of the holidays.  I am sure we will.  Things will just have to be a little different.  Thoughts and prayers are what we want right now.  We need nothing right now - like food or dinners or taking the kids or helping around the house, etc.  We will ask when we need something.

Update

We are still in waiting room.

sent from google android phone

1 hour before appt

GG

I am sitting in starbucks near St. V's.  At lunch I finished 'Thanks for the Mammaries' book by Sarah Demmon, an Indianapolis survivor.  My bosses' wife gave me this book.  She works with the author.  It is a good read, and as such, I bough a copy off of Amazon.  I like to see people get paid for their work.  Plus we can have a copy to pass around.  It sure taught me a lot about chemo, breast reconstruction and other related things.

It gives me a lot of info on what to expect at each appointment.  First thing it did was make me realize we will not have all answers today.  This initial appt with a breast surgeon will not answer our question of 'has it spread anywhere else'.  That comes from follow up tests, or so it seems.  Makes sense.

I got a Moleskine notebook (pink in color) to be my note taking platform during all this.  Not my journal, but just notes, timelines, documentation, questions, etc.  I hear this is essential.

Jill's mom will be there to take the emotional front line if needed so I can take notes, ask questions, etc.

So here at starbucks I have spread out on a table:  laptop (with some related sites open), pink journal, book, and some print outs.

Jill and I have both read up on telling kids.  I am not looking forward to this, but I am not dreading it any more.  Reading on it has helped made me realize they are just as much a part of this.  They look to us for stability, but they also trust in us.  Keeping things from them could make things worse.  Now we will present this with a strong and positive front, no doubt.  And we will not flood them with technical info or stats.  And we will answer every question they have from moment one until  . . . well until the questions stop.

Jill has spoke with Holly's school counselor.  And maybe teacher (if not, I think she will).

To everyone who we have talked to - thank you.  Thank you.  thank you.  Already it is so clear we have a great support staff and people who care.  That speaks to how wonderful my wife is.  She is my everything.

More soon.  I will update this blog this afternoon or evening, as I know people are waiting to hear what we hear.  If you do not get a call from Jill or I and just read this stuff on this blog, we are both sorry.  Literally every minute we think of other people we care about and need to contact.  Some may think Facebook is not the right avenue for this type of thing (I disagree FYI) but I know of no other way to get this out to those who would want to know.  I suspect we will go fully facebook public in the next few days.

Pray for us if can.  Send advice is you have it.  Just think positive if that is your thing.

I often sing some song lyrics that mean something to me - you rise, you fall, you're down, and you rise again.  They have more meaning to me now.

 

12/7 morning updated

GG

Jill is taking the day off to read up and get prepare for this afternoon.  I am working a half day,  but am not getting a lot done.
My sister in law knows this doc. Also,  i have a friend that works in this facility.  Both are good things for us.

Last night was tough and today is moving too slow

10/6 update

GG

today we received confirmation that Jill in fact has cancer in both her right breast and her lymph nodes on the same side.  

We have an appointment tomorrow at 3:15 at St.V's to see Dr. Schmidt.  We have heard many great things about him and are happy to have an appointment so soon.  Once we see him we will have a better idea of his outlook and plan and we will decide to move forward with it or seek other opinions.  

I suspect we will be telling the kids tomorrow night.  Ugh.

Initial post with backstory

GG

Jill found a lump in her right breast on November 18th, the day we arrived in NYC for a 4 day vacation.  She called her OB that day and setup an appt for the Monday we got back.  We were not overly concerned as her mother has had many cysts that were benign.  

Her OB figured it might be a cyst as well, but of course ordered a mammo and ultrasound.  Those were scheduled for Thursday Dec 2nd.  

At the ultrasound the doctor said that due to shape and look of the lump, he suspected cancer and wanted a biopsy.  He also suspected cancer in her right lymph nodes.  

We scheduled the biopsies for the next day, Friday Dec 3rd.  

Thus started the horrible wait.  From Thursday to probably Monday or Tuesday of the next week.

We carried on as normal over the weekend, which included some holiday activities.  

Jill was largely unable to sleep, which was completely understandable.  After two nights of nearly no sleep, an Ambien gave her some much needed rest on Sunday night.

We have told many loved ones.  It is hard to think clearly when you hear the C word, so I am sure we have missed some people that we would have liked to tell directly.  Sorry.

At this time, our kids do not know and we want it to stay that way until we know the real outlook and plan of attack.

We have already had an unreal outpouring of support, love and prayers.  We talked to some folks at our church on Sunday as well.  

What this site is

This site will be used to follow Jill Golighty's journey with breast cancer.  This blog will allow Jill and her husband, Greg, to keep people informed during this process.  We have so many friends and family that it has already become apparent that keeping people up to date will be a challenge.  Thus, this site will be a place where people can stay up to date.  Additionally, it can be a community for those that support Jill.

Quick FYI and or FAQ's (this part of this post will likely be updated as time goes one) - purely about this site.

The initials at the start of any post will indicate who is actually writing the post.  JG is Jill, GG is Greg.