Wanted to share something . . .

Below is a cut and paste email from a friend of mine, Jenny D ERRR, Jenny Gerow. I wanted to not just to call her out (I did not even ask her) but to give you an idea of our perspective in all this as seen through those who care about us. This is one of many, but it was one today and it hit me hard. Also, by no means do I mean to exclude all the others who have said, emailed, mailed, and in-person let us know they care. What it shows is that so many are are there for us. That this impacts them too.
This is a quick but sincere thanks to all that have helped us. To our family. To our friends. To our co-workers. To Holly's travel soccer team (we miss you guys so much). To neighbors. To strangers.

To give you a quick background, last year at Breakfast for Santa at Forest Park (which was this morning) Jill and I attended for the kids. It was the weekend of unknown for us. We new Jill had cancer, but not how bad it was or what the treatments would be. At the time, our family knew but the kids did not. It was a challenge, clearly, to do that morning. But even then we wanted to show that life goes on no matter what.



Dear Greg and Jill:

This morning at Breakfast with Santa, all I could think about was that one year ago today, you were sitting in the same room, at the same activity, trying to act as if everything was normal. When, in actuality, your entire world had just turned upside down.

I felt this huge sense of wonderment, that it was a year later, that you had made it through so much, and ended up at the exact same place 12 months later. I can only imagine the difference in your thoughts and feelings today.

It affected me profoundly, so I am sure the moment was not lost of you either. I felt such a sense of relief and happiness for all of you. You still have obstacles and unknowns ahead of you. But you have made it so far and with such an air of positivity and humor. To, me it it seemed like a million years instead of just one. So it had to be infinitely more for you guys.

I remember sitting at this computer and reading the email. Calling Amy Crispin, and crying together with her. It had never hit so close to home for me, and it was a stunning shock. I will never forget the moment. But, what I remember most is the grace and humility you have both shown thoughout all of this. I hope if such a thing occurs to any other loved ones or myself, I can put up such a brave face. I respect both of you, and am very happy to have you in our lives.

In the next few months, please let me know if there is anything I can do. It helps me not feel so helpless while you struggle though your difficulties. I am so happy you are sitting looking from the other side of the battle. I never had a doubt you would beat it, but you scared the shit out of us. :)
Love,

Putting things in correct perspective (one year later)

This morning I had the girls. By that I mean it is a day when Jill leaves early and I get the kids ready and on the bus. As is not uncommon, this is full of various issues that pop up. Breakfast selection issues, clothing issues, school bag location issues. On top of that are the holiday additions (opening the Advent house, playing the Christmas thing of the day countdown thingy). On top of that are the variables - Jill calling to say Lauren is going to ride home with someone else and there is a note that needs to be put in her folder and birthday party gifts she has to take with her. Ugh. All of this goes fairly well, but it is so easy to get caught up in the ‘why does this have to be so hard?’ (TWSS) and the normal ‘I wish things were easier’ thoughts.

A year ago today, later in the morning I got to see my wife walk out of the back of the doctor’s office and tell me that we need to go into the conference room. I could see it in her eyes right at that moment that life would never be the same. That the lump in her breast was not the harmless cyst that we were expecting (I was there just in case). At the moment everything else meant f**k-all. Things like who was going to get the kids on the bus did not matter. They were just details of life. My wife being there a year later to even have the option of getting them on the bus was my concern.

As I have said before, there are two sides of this. First, I am thankful that Jill is currently doing so well that we can get stressed about such daily minutia. But on the other side, it sickens me at times that we can lose perspective so damn fast. Jill’s illness is going to be front and center again come Feb as she starts her surgeries. Then after that her going into menopause at 37 years old. And this is all the best case, which it looks like we are lucky enough to be going through.

Today is, as you might imagine, a very emotional day. Sad that it did not hit me until I was walking into work - that it was 12/2. Our date of learning of cancer. Lance Armstrong has 10/2 and that is Livestrong day. Everyone knows the day they learned. Right now the fears and pain are re-opened. I remember going to Lyndsay’s house to tell her. Calling my mom who saw my car at the Hospital and knew something was up. Going to lunch at O’charlies and realizing how we coast through things like answering the waiter’s question of ‘how are you two doing today’? And how awful that weekend as as we waited for official word (we more or less knew based on ultrasound) which was required to know how bad and what the next steps would be. So this weekend when the normal stress of a holiday weekend comes into play compounded with out of town family on site I will try to remember that at its worst it is exponentially better than this weekend last year. Every day is a gift and everything can change in a second. It really can.

and so it begins . . . the 1 year later days

Today, based on flows of the calendar - as in the Thursday before Thanksgiving (not actual same date), marks the one year mark of Jill finding the lump. We flew out to NYC that morning for a 4 day weekend that included seeing Notre Dame play in Yankee Stadium. We had to get up very early and by the time we were able to actually check in that afternoon, it was time for showers. Jill showered first and came out in her towel and told me to feel her breast. Mind you, in 20 years together it was the first time she told me do so. ;) There was quite obviously something. Of course the unimaginable diagnosis of cancer went quickly through our minds . . . you could see it in both our eyes. But we assumed it to be harmless and it really had only a small impact on our weekend. It barely came up in conversation between us outside of coordinating an appointment once we were back home. But I know we both thought about it.
It is odd how our brains work. In a place like NYC on a 4 day fall weekend, it is much easier to keep fears in the back of our minds. But during conversations or walks or whatever those 4 days, it of course popped in our minds. Had we been home it would have been probably all we thought about. I am thankful that we still had a great time in the big apple. We shopped. We ate. We saw shows. We had a great time. We assumed the lump was harmless and I would never change that. Us being more anxious that weekend would have done NOTHING to prevent or treat what was growing in Jill. In reality, having fun was the best thing we could be doing if we were not already getting treatment.

Today, a year later we had an appointment with the plastic surgeon. Just a prep type meeting that had little importance . . . but a reminder of where we have been and where we still are. That second part is something that is too easy to forget, which is both good and bad. I am thankful for every normal day when we are more stressed about who is getting girls on bus or traffic than cancer.

I will save more of the feelings and emotions for the anniversaries of the other stuff (semi official diagnosis, official diagnosis, first appt, etc).

Jill visits the gym

Jill started at LA Fitness today, and will be working with a personal trainer 2 days a week for the next 6 months. This will lead up to her surgery and being stronger and lower in weight, both will help with the surgery, recovery and results.
Good for Jill!!!

Site Spyware update

All,
Google detected some javascript malware on this site. I found this on 9-Sep-2011, but the info points to it being around for a week or two before. The theme I was using, called "one day at at time" (breast cancer theme) was a free theme that was quite out of date. I have replaced it with an up to date theme from Elegantthemes, my favorite paid theme provider. It is not longer pink themed, but I will tweak it a bit to at least make it work. Custom wordpress stuff is beyond my skillset.

Jill's sister update - surgery today

All,

You may or may not know that Jill's sister is having prophylactic surgery today, a double mastectomy.   Like Jill, Lyndsay is BRCA1 positive, which means that she has a significantly higher chance of getting breast cancer.  She is making the brave decision to do this (seeing Jill go through cancer helped that a bit) and she is on our minds today.  Please remember her today.  I will post updates as I get them.

As a quick side note, and not to hijack this thread, Jill is doing great.

Done with Radiation!!!

Jill had her last Radiation Treatment today!  Yeah!  She should be cancer free as far as I understand this process.

She now has 6-12 months off to recover.  That will be both welcome and a bit unsettling as we have been actively fighting this thing for over 7 months.

 

Radiation update

Hey everyone – hope all is well.

Jill is now in her 4th week of radiation!  She is to do 5 or 6 total.  I cannot believe it has gone by that fast, but it is so different for me.  For Chemo and surgery, I was part of all of it . . . and it was part of our lives as in on our calendar, etc.  Radiation is something Jill does on her way into work on her own.  

Just in the past few days she is starting to see some of the side effects.  Her skin is getting red at the site.  This is all cumulative and is right on schedule per what the doc said.  It will linger after treatments stop as well.  Though Jill has not said much about fatigue, I think it is building up a bit.  Of course, her ‘everything is totally normal, life goes on’ attitude might be adding to that.  But I would not have it any other way.

After radiation, we will go into a period that will be very odd . . . one where nothing is happening as far as treatment.  Purely recovery.  I think that will be at times a relief and at times stressful as I suspect it will feel like we are not moving forward or fighting this enemy. 

Of course, we have a vacation in August to break that up.  Then school starting.  Then fall.  Then Holidays. 

Busy life, no time for cancer ;)

Well, today started the 2nd week of radiation.  Jill is starting to get a bit irritated.  Well, her skin is irritated.  She is always irritated with my kids fighting each other or anything I do.  But she has felt good and has been busy.  Working, heading to soccer games, cleaning the house, running a party for Holly on Friday, and so many other things.

One thing that anyone with any illness can tell you – life refuses to stop for any reason.  We have had good things (stuff for my 40th birthday, Holly’s party, and some family time), bad stuff (I lost an Aunt a few days ago) and some run of the mill stuff.  At times I feel guilty of not giving this disease enough of my worry.  In reality, that is a good thing – I think.  I do not go to bed or wake up worrying about what if’s.

This coming weekend we are going to do a ‘staycation’ for my birthday.  We will be staying downtown Indy for two nights.  One night with kids, one without.  Basically, enjoying the moment and getting away a bit. 

We will meet with the plastics guy this Thursday.  I will update after that. 

Radiation Update

Sorry, I have been quite for a while.  There just has not been much going on as far as the cancer part of our lives and there has been a lot going on in all the rest of our lives. 

Jill had her 4th radiation treatment so far today.  So far, totally uneventful.  No additional fatigue or skin issues, but we have been told those are all cumulative and will be coming in the near future.

Jill is struggling with what to wear on the hot days, at work or on the boat.  She has one boob and has lots of marking on her chest and armpit that extend near her neck.  On the flip side, her hair is growing back!  She has quite a bit on her head now.  Much to her dismay, it is growing back everywhere . . . like her legs that she has not had to shave in a long time.  Good with bad I guess.  Jill is also figuring out what hats work best in the summer.  I suspect she will be more of a hat girl from now on.  I hope so – I am now so used to it.

More news when there is more to report.  We meet with the Plastics doc in the next week or two.

Cross linking to greg’s blog

a little post from Greg that relates to Jill’s cancer.  http://www.golightly.us/?p=70

We met with radiation oncologist

Jill and I met with the doc this morning to talk about radiation.  He was very nice.  He first explained why he (and subsequently Dr. Birhiray and Dr. Schmidt) feel that Jill should do radiation.  We had already made that decision, but I like that he started with this – really showing that we are in charge of our treatment.  He even gave us a backstory of radiation and its treatment of breast cancer, which educated us on the why’s. 

Jill will get prepped later this week – they do an MRI or CT and then use those images to target the actual focus of the treatments.  Then starting some time next week, Jill will have radiation 5 times a week for 5-6 weeks.  The side effects are likely to be what we expected – fatigue and skin irritation.  But Jill should be able to live a nearly normal life.  She can work as energy allows.  She can exercise.  He hair will continue to grow back in.

We asked about the fact that as part of the surgery they took out 2 lymph nodes that were positive – how can we feel safe that the other nodes do not?  He said it really is not a big deal, because he is going to treat that area. 

So really, nothing new to report today, except that we are moving forward.

oh what a night . . .

Last night we went to “a Night of Magical Moments” presented by the Megan S Ott foundation.  http://www.megansottfoundation.org/

You can read all of the details at that site, but Megan lost her life to breast cancer in 2010.   This wonderful foundation raises money to help others fighting this battle.  Jill is one of the recipients of the foundations generosity.

Jill and I, along with several of her family members (and spouses) went last night.  In addition, we knew many of the folks at the event.  Megan was from Noblesville as are Jill and I , so we have a lot of connections.  Jill was selected by the foundation partially due to the similarities (young when diagnosed, from Noblesville, two daughters)

Prior to dinner, there was a brief presentation about Megan.  She was far too young and is survived by her husband and two kids.  Then it showed some pictures of current recipients.  After seeing Megan’s story, it was very difficult to see my wife and my kids on the same screen.  Pictures that I took and that I have seen many times made me cry.

The the event was wonderful.  Dinner, drinks, and dancing.  Well, as you might suspect, I did not dance.  But Jill did.  And for much of the evening, it was like any wedding or party – Jill out on the dance floor having a wonderful time and me having a drink and conversation with friends at a table.

I am stunned at what this foundation has done in such a short time.  There were around 400 people in attendance and the auction items were amazing.  I suspect they raised north of $50k.  It was and is an honor to be part of this foundation’s love.

I hope this event happens every year and I hope we are there for many many of them.  Look for us to round up you all to come next year.

May 12 Update

We met with the Breast Surgeon today.  First, Jill had her staples removed and her incision looks great.  Well, to be clear it looks great to the doc and medical staff.  To Jill and I, well, it kind of looks like a big gnarly scar where a bo0b used to be. 

Dr. Schmidt answered any questions we might had and said Jill will be ready for radiation on time (in 2 weeks).  We are now going to meet with the plastic surgeon in the coming week or two.  They will take a look at Jill and start to devise a plan.  So, after getting a timeline from the Radiation Oncologist and then an assessment from the plastics doc, we should have a TENTATIVE plan moving forward, post radiation.  As in the various surgeries (left removal, right reconstruction, left reconstruction, and removal of ovaries.  This will probably be 2-4 surgeries.

I got some good news at the doc – from a selfish standpoint.  Jill has been instructed to lose ~30 pounds before these surgeries.  Why is that good for me?  I have put on about 20lbs since she got diagnosed and try as I might, without getting the junk out of our house and Jill on board (to stop me from making bad choices) I have little chance of succeeding. 

So starting soon (Monday I say, I am am chief blogging officer) we will work together to loose weight.  Now – who wants the crap in our house?  Free to anyone. 

Next update will probably be after we meet with Radiation Oncologist next week.

Oh yeah, and Jill gets her port out on Monday.

Update after Oncologist meeting

We met with the Oncologist today and went over the results of the biopsy.  We had been given the results last week by the surgeon’s assistant and were looking forward to today to gain a deeper understanding.

The results of the post surgery biopsy were in a word – good.  They were what was expected.  Basically most of the cancer had been destroyed by chemo, which means Jill had a very good response to chemo.  They had always expected to find some cancer after chemo.  As Doc explained to us today – there are multiple bullets in our gun of treatment.  Chemo was the first.  It did very well.  Now there will be radiation that should get rid of all the disease in the affected areas (lymp nodes on right side, and her breast area – the skin that is still there).  Once that is done, the next bullet will be the Anti-estrogen therapy that will last ~5 years. 

So, we are on a course that is as good as could be hoped for.  The plan has not deviated one bit from the projected treatment plan we heard in December.  That is really wonderful news and we need to understand it as such.  I mean -  basically if we were told that everything would be great after phase 1 when we first met with the docs, we would have danced.  Well, lets dance. 

What happens now? 

1.  We will meet with our radiation oncologist soon.  Probably this or next week.  Jill will likely started radiation the week of May 23-27.  It is likely that it will go for 6 weeks, but we will know more after we meet with that doc.

2.  Jill will get her port out soon.  That has no real impact on anything, but it is one less thing for her to deal with (she has to get it flushed from time to time0.

Tubes removed, and an update

This morning Jill had her drain tubes removed.  It appeared to be a very painful thing.  They basically grab a hold of the tube and yank.  However, after it was done Jill was very happy to no longer have tubes and containers attached to her body.

We got the results of the biopsy from the surgery.  There were still some cancerous cells in breast and lymph tissue.  At a core emotional level, this really was hard to hear.  However, it was always expected.  From the start we were told that we have chemo for 4 months.  Then surgery.  Then radiation for around 6 weeks.  Then other breast removal.  Then at some point reconstruction.  The chemo kills most of the cancer – it shrinks it way down.  It did that.  It could not be found on scans.  Just in a biopsy in some cells.  Unless the cancer was 100% gone, we would need radiation.  We were only recently even told that we might not need radiation if the biopsy came back clean.  Of course, we secretly hoped for that . . . but in reality we are exactly where we thought we would be as part of a successful course of action.

Once will is recovered from the surgery, she will start radiation.  We have not met with that doc yet, so we have no details.  We will meet with the Breast Surgeon in a week or so.  Today we met with his nurse who gave us the results.  Our surgeon will help us pick an radiation doc.  Then we will meet with them and get started. 

There are still many unknowns.  Like if Jill will have left breast removed before reconstruction.  It is recommended that she wait 6-12 months from the end of surgery until she gets reconstructed . . . and we are not sure we want the left breast that long due to Jill’s predisposition to breast cancer.  But we will discuss that with the doc soon.  This all means that will not be fully rebuilt and done with this until probably summer or fall of 2012.  But as long as we are moving forward, that is just part of this deal. 

4/28 update

A full day home and it has gone rather well.  Jill is feeling very good.  Very little pain. 

The girls were very happy to see Jill yesterday after her overnight in the hospital.  They seemed fine until about bed time and when Jill and I went into the bathroom to do her drains, the girls seemed to sense something was up.  There were waiting outside the bathroom sitting on our bed.  Mind you, they had been in their own beds already.  All seemed okay, then Holly started to really get upset.  We figured out it was the act of us hiding something and her assumption that it was bad.  So we explained it and all was well.

Today Lauren and I spent the day with Jill.  Jill was able to shower, though we had to kick the girls out for that.  We explained that at this time mommy is not quite ready for them to see this.  In fact, I am not so sure she was ready for me to see as well.  As I was drying the incision, she made the comment that this must be the worse part of better or worse in our wedding vows.  I told her this is just some blip and that she will be whole again.  That this is all meaningless in the big picture.  The truth is, even as fast as this all has moved, it has allowed us to both deal with the changes.  The lump, the diagnosis, the nausea, the hair loss, the pain, and now this. 

I will be taking Holly to Michigan for a soccer tourney.  Just her and I (well, and her team).  She is super excited and although she will miss her mommy dearly, I think this will be a great get away for her.  Part of me wants to stay home and take care of Jill, but I realize that chances like this are few and later I would be upset if I did not take the chance to have a weekend Holly may remember for the rest of her life. 

We are home

Jill was discharged around 11am.  We are now home.  Jill is feeling really good, surprising the both of us.  The nurse said that is really somewhat expected, and that many just take extra strength Tylenol to get by.

We just did our first tube draining and it is less then awesome.  I will not get into details, but she has two drains coming out of her body (which is really cool in a sci-fi sort of way) that lead to two containers that fill with fluid (not at all cool, even in a sci-fi sort of way).  We drain them and measure.  This will happen two times a day until the amount of fluid gets low enough.  She was this crazy bra that holds her one boob in place and has two pouches for the drains.  I am quite sure this is not in any victoria secret catalog. 

Lauren will be home soon.  She misses her mommy so much.  In fact, we are a bit worried about her inability to really express herself during this process . . . it is manifesting as not ever wanting to be left alone.  On a side note – take that all of you who say she is a mini me.  Everyone knows I am a total loner. 

Right now we do not need anything.  We have care lined up to watch Jill every hour from now until Sunday night.  I will be out of town Friday-Sunday with Holly on her first out of state soccer tourney, but Pam is staying with Jill the entire time. 

Bandages off

The bandages are off,  and things look good.   Well, good as far as healing and pain.  :-)   it is odd to see, that is for sure.   But not too bad.  

All in all, things are going great.   Another step down!

Updates

She is in her room.   Doing great.   She did wonderful.

Out of surgery

She did great.   Everything looked great per the doc.   We will see her in an hour or two

In surgery

Will update later

Surgery tomorrow

Tomorrow we start part two of treatment – the first surgery.  Jill is scheduled to have her right breast removed along with affected lymphnodes.  She will stay one night at the hospital, then will have a 2-4 week recovery.

At this point, we do not need anything . . . we have this week scheduled out and Jill will receive wonderful care.  Just wish us the best of luck. 

Look for more updates in the coming days.

Race for the cure weekend

This past weekend was the race for the cure and clearly it meant a lot to us.  We had all kinds of friends and family donate, walk, and support us.  Many people came in from out of town.  Despite the poor weather, we had a wonderful time.  And a very moving time.  One cannot help feel a mix of emotions – sadness, grief, fear, hope, and joy.  There are so many people there in so many different situations that are all united by one cause. 

Thanks to those who donated.

Thanks to those who participated.

Thanks to those who came over.

Thanks to those who helped us with food, planning, logistics, etc.

And thanks to everyone who loves us and supports us in any and every way!  

Surgery in a week and general status update

Sorry for the silence . . . I just have been doing some other stuff.  So Jill tells me people want an update.  Kind an odd thing really . . . people, who she is talking to, want an update . . . and I need to do it.  So off we go.

First, Jill has surgery 1 week from today, April 26th.  It had been the following week, but they bumped it up.  We have seen both the breast surgeon and the oncologist and they are very happy with all the results of the tests. 

Jill will have to stay overnight and then will need to take it easy for 1 week.  Then there will be a period of 2-4 weeks for a more complete recovery. 

After the surgery, the tissue will be sent to a pathologist for closer evaluation.  The results of that will determine the need for radiation or not.  Clearly we would love to not have radiation, we have been planning on it and will be just fine should that be the recommended course of action.

We also met with the gynecologic oncologist and discussed our options.  Unlike all the other steps of this journey, this one is not clear cut black and white – specifically what girl parts to take out and what to leave in.  The breasts are gone, we know that (and that is the breast surgeon).  The ovaries are gone based on the BRCA1 gene.  The tubes are gone too, as they tend to be the starting point for cancer in that region.  The uterus and cervix are the questions.  We are going to do more research and talk to the doc again.  And this decision is a bit off, so we have time to make a choice.

Like always, we are just looking to the next step, which now is the surgery. 

Food Calendar update–on hold

All,

We are asking that the food calendar (linked at the top of this blog) be put on hold.  Well, to be more specific, the actual bringing of meals to be put on hold.  Right now we are very much in a normal life pattern and are in not in need of the help.  We are hoping to not need meals delivered again to be honest, as that would mean things remain good for us.  We wanted to give those around us a break as well. 

We cannot thank people enough for everything they have done for us so far.  And we know there will be many more thanks needed for the coming months for all kinds of things.  Right now I want to focus on the meals.  Getting meals two nights a week has been so nice for us.  During Jill’s worst times they have really saved us so much time and ensured that we were able to eat as a family.  During Jill’s better times, they still were welcome breaks during weeks that were still very busy with normal lives and Jill’s battery of appointments. 

As will be the case in so much of what we have been given, we will never be able to repay those that have helped us.  On one hand, I hope to never be able to directly repay any of you (meaning we hope none of you go through this).  On the other hand, there will be ways we can repay those around us over time.  We hope to do that.  We also hope to pay this forward.  I can assure you I will now think a lot differently when I hear of a friend or a friend of a friend in need. 

We met with the breast surgeon



This morning we met with Dr. Schmidt.  We had an early appointment, which was sort of bad as we had to get up early, but good in so much that it is done.  We LOVE Dr. Schmidt, but to give you an idea, we saw him at 8am.  The appt was at 7.  Our original appt was 4pm, so this early option was much better.

The results of the tests (mainly the MRI, as it is the most important) came back clean.  I forget the term he used, but it essentially meant everything was nearly all gone.  This appeared to be the best result that we could have seen.  He was very pleased and said that radiation might not even be needed.  We talked about the surgery.  It will be the first week of May.  The operation takes about 1-2 hours and according to him is really fairly easy and straight forward.  I might ask if I can just have a go at it, that being the case.  She should be a bit off for about a week, but not horrible he said.  She will be off work for 2-4 weeks.  She will have tubes for drainage.  Sounds fun, that.

The impacted areas will be sent to a lab for analysis.  Should they came back clean of cancer, Jill will not need radiation.  If there are cancer cells, then there will be radiation.  We have expected radiation all along, so I do not see us being totally upset should that be the case.  Of course, no radiation would be the better option.

As such, that is really all we know at this time.  All good news.  We know the next step.  Come early to mid May we will have more info on the next step.

This afternoon we meet with the Gynecological Oncologist to discuss Jill’s ovaries and their impending eviction from her body.  I will post more on that tonight or tomorrow.

 

Early April Update

Jill is now a week and a half past her last treatment.  As is the normal pattern, she was feeling fairly good this weekend.  Unlike all past treatments – she has no treatment this week (or again).  Yeah.  She had her ultrasound and MRI last week to make sure the cancer is all gone.  We have no official results as of yet (will get them when we talk to the breast surgeon), but the ultrasound tech said they could not find anything in the breast and they only found one lymph node and it was tiny, which is great.  We meet with the breast surgeon on Thursday and at that point we suspect  that the next phase of this will be fully revealed.  I mean, we tentatively know what is coming, but I think we will get some dates and a timeline.  Dr. Schmidt gave us a tentative plan from day one, but since then has been very keen on us only focusing on the part at hand.  This has been somewhat challenging based on the fact that Jill and I are planners . . . but I think he is right to do it.  First, you never know how any part of these treatments will go, so why setup a patient for a let down?  Second, it helped Jill and I just worry about this . . . not trying to plan our entire calendar for the year 2011.  It has let us let go a bit, which is a good thing.

So . . . on Thursday we meet with the Gynecological Oncologist.  This will be the doc who ends up taking Jill’s ovaries out (or a similar doc, should we for some reason not feel a connection with this doc).  We have been advised by several to go to a Gyn that specializes in oncology just to be on the doubly safe side should they encounter cancer in that area during surgery.  Or something like that.  That is said to be a 4 hour appt.  I am guessing there will be an ultrasound at a minimum in addition to consultation, but we shall see.  That surgery will be post mastectomy and post radiation, so it is a while off.

Then we meet with Dr. Schmidt late in the afternoon.  This has the making of a long afternoon, but that is not an issue.  We have learned a new kind of patience at these physicians’ offices.  Just part of the deal with the flipside that we have always been afforded the time we need while face to face with the docs. 

When that day is done and we get the info we are hoping to get, we will post the next phase plan here.  Best case, and one we are hopeful to get, is that she is currently cancer free (or as close to it as they want) and that surgery will be scheduled for late April or early May.  We are looking forward to this weekend as it will mark the first time in a while Jill has been more then 13 days post chemo treatment (meaning she should be feeling good) and we will know the next part of this journey. 

pics from last treatment

They are on facebook, so many of you have seen them.  But here is the link the non-facebook site

http://photo.baldphotog.com/Other/pinkforjill/15038425_nXgJ3

 

new pics starting on page 6

The breast cancer community

I am writing this as Jill is going through her final chemo treatment.  I was with her for the first two sessions that were at the cancer center, whereas this is at the breast center.  This is my first one at the breast center.  This is sort of an all at once showing of what we have seen since 12/2 – an amazing community.  While the cancer center was nice and inspirational, being here with only breast care patients is something all together different.

It makes me think back to something that came up in a discussion a few months before we found out Jill had breast cancer.  We get together with some of my high school friends, and their families, about every 2 months.  We call this the book club, though we do not discuss books.  Or more accurately, we do not have a set book discussion.  In all our topics books do get discussed.  But I am off track.  There was a discussion about breast cancer and the community.  At any rate, Jenny made a comment that as an outsider, the community looks so amazing it almost makes you want to be a part of it.  Of course she, and everyone, would not really want to get cancer.    But what Jenny said is so true.  The people in here are amazing.  So much support.  So much hope.  I know Jill is going to miss these folks.  The staff and the other patients.  Seeing how these people generally love and care for each other makes me know why.

Our guest blogger today - Me (Jill)

As I get ready to go to my last chemo session I find myself reflecting back on the last four months.  Wow!  I have been so incredibly blessed through this entire process.  My family, friends and co-workers have really stepped up and taken care of my family and me more than I could ever imagine.  People - I have someone that comes and cleans my house once a month for free - how spoiled am I?  I have met great people at all my dr. appts from the nurses, doctors and fellow patients.  For those that have not been through something like this, I have found that the people you meet that are also going through their own journey are so supportive.  It is an amazing community to be a part of (not that I would choose it).  I have met some great women during my chemo treatments!  Every single need we had (some we did not even know about) was taken care.  Thanks to God for all of it!!!  He has put amazing people in my life through all of this and I would not change a thing.  As you can imagine, I am so excited to have these chemo treatments behind me.  I am ready to conquer the next step and get one step closer to having this whole thing behind me.  Thanks to all of you for your support and prayers!  I truly appreciate it.

Going into final treatment . . .

This Thursday will be Jill’s final chemo treatment.  She will have follow up scans in the weeks after to make sure the chemo has done its job, but we are very hopeful the scans will show the results we are hoping for.

If everything goes according to the plans, April will be a month off for Jill before surgery.

I will take pictures and maybe video from Thursday’s treatment and will post after.  I know many people are with Jill in spirit as she goes through these treatments, so I want to show what they are actually like. 

Post treatment #7

Jill felt decent through the weekend and into yesterday.  She was hurting at times and a bit tired, but felt like it was not as bad this week.  I suspect it is because she took it easy, but it could be any number of things.  We had a nice mostly quiet weekend.  Well, I went to a fundraiser dinner Saturday night where I drank and spent too much . . . but the girls were not at home so Jill was able to just relax.

Jill and I started to watch Glee, season 1 this weekend.  We are about 7 episodes in and are really enjoying it.  Funny and wonderful music. 

Thursday the 24 will be the last chemo treatment, so until then updates will be sparse. 

We can see the finish line (of part 1)!

7 chemo treatments down, 1 to go!!!  The last one will be 2 weeks from yesterday.  Jill had an uneventful chemo treatment yesterday.  Uneventful is a good thing. 

She is taking it easy today to try to keep her strength.  It seems if she pushes hard in the first two days post treatment, even while she is feeling okay, it seems to add to the negative effects. 

We are going to make sure she gets some quality downtime this weekend.

On the big picture front, we have nothing to report.  After chemo she will have tests to make sure the cancer is gone.  At that point, we will start to get the plan for surgeries. 

That is it for now. 

Another calendar Month down

Yeah, it is March.  One month closer to Jill being 100%. Jill had a rough weekend.  She felt bad starting Saturday night and quite honestly was a little down in the dumpster mentally that night too.  What was amazing to me was that this was really the first time she has let this thing get her down.  That is stunning really.  By Sunday morning she was back to herself as far as her attitude.  She was quite sore though and stayed inactive most of the day.  Sunday night (Monday morning actually) we were awaken from sleep by the sound of water alarms going off in our basement.  The floor drain was a fountain pushing water into our basement.  Jill and I ran down and started to get stuff out of the basement that could get ruined.  Had I been of full mind and had a moment to think, I would have stopped Jill as the water was insanely cold and not all that clean.  But I got it stopped in somewhat short order and Jill was able to go back to resting. 

Long story short, damage was minimum because we got down there quick and because our basement is largely able to deal with moderately small amounts of water.  We have tile floors and many things are off the ground.  It is now cleaner than it has been in a long time – some heavy duty cleaners and a lot of effort and we are better than ever. 

Jill worked from home yesterday and went in for a half day today.  She is now napping.

Weekend update, partial

Will post more later, but for now:  jill was really sore and down this weekend.  She woke up much better today.  Yeah! 
And sunday night we got woke up in middle of night when or basement flooded.  Ugh.  Things are nearly back to good today.

Saturday update

This is very much a Greg-centric post.  Yeah, I know I am the author of this site, but at times it flops between me being a reporter of what Jill is going through and sometimes it is more of my blog.  This is the latter. 

Honestly, today was a good day.  First, I was able to sit down for about 80 minutes with a good friend over coffee this morning.  It was just a nice time out.  Yeah, we did talk about Jill to some extent, but only a little.  Todd cares very much about Jill, but follows the blog so we did not have to dedicate this time to her journey.  We talked cell phones, golf, coffee, supporting local businesses (he is big on that) and various other topics along with some movie quotes.   It allowed me to slow life down a bit and just talk and laugh. 

Then I came home and Jill took a nap so that she could take the girls to Justin Bieber’s movie.  That she did this afternoon.  I think it was great for the girls to do that with her on during a time when mom has been a little tired. 

During that time I did about 1 hour of yoga in the basement and was really able to quite my mind.  I have been reading a book on meditation and have been working on taking short periods of time just to ‘be’.  The only downside of this hour is it flew by so fast.  But it was great.  Then I worked out and watched some TV.

Jill came home and was showing some signs of being a bit knackered.  She is now resting in bed watching Grey’s on her laptop (cannot get the abc player to work on her android tablet – which might actually be good as it prevents me from waking up to Grey’s at 3am when she cannot sleep).  She is doing okay, but knows she has to rest. 

Holly is off to dinner, shopping, and a sleepover with a friend.  Major thanks to John and Lana!  Except they forgot to tell me a great band was in concert at the Vogue last night, so at a minimum this just makes us even. 

I am cooking some frozen pizzas right now.  And enjoying some beers. 

All I can say is that this was a wonderful day.

Jill’s Race for the Cure team

Please visit http://race.komenindy.org/site/TR/Race/General?team_id=45344&pg=team&fr_id=1090

Thanks Lynds for running with this!!!!

Another treatment down

Jill had an uneventful treatment today, which is a good thing.  She is feeling okay, but is running out of steam as the day wears on. 

Nothing to report from the doc, which is just fine.

Back to treatment tomorrow, and some updates

Jill has a blood draw today to check her counts and then chemo tomorrow.  This is #6 of 8 and #2 of 4 Taxol treatments.  She was fairly miserable last time, so I see a low key weekend in our future. 

Not a whole lot to report, which is why this blog has been quiet.   This past Friday we had some friends over and had a great time.  This is a group of folks we get together with every month or two and reinforced how life is in so many ways still normal.  When we last got together with these folks, just had just been diagnosed, so it was the first time they got to see her bald.

Saturday evening Jill and I went to a movie (just go with it) and then out to dinner (Brockway pub in Carmel).  A date!! 

This week Jill has been working and feeling nearly normal. 

Meals are coming in twice a week (not a single person has missed!).  Gifts, cards, and kind words seems to appear every day. 

I will post tomorrow or the next day. 

Ultrasound negative!

Today at the breast surgeon, the ultrasound and manual exam could not find cancer in her breast.  Just to be clear, I want to make sure this information is being stated accurately:

1.  This does not mean Jill is officially cancer free or cured.

2.  This was the hoped for and expected outcome of the chemo treatments.  Maybe not this fast, I am not sure.

3.  This does not change any of the treatment plans.

I do not mean to be a downer with the above 3, I just want to avoid people thinking that this is largely over.   It is not.   IT IS, however, WONDERFUL NEWS.  It means she is very receptive to the chemo and it means we should be proceeding ahead with the course or treatment without delays or setbacks.  Yeah!

So, 3 more treatments.  A month off.  During the month off there will be advanced testing (MRI at least) of the areas to make sure the cancer is 100% gone.  Then Surgery to remove the sites. 

Jill and I are so happy. 

One day at a time . . .

My last post, and some conversations this week, made me really think about the one day at a time mentality.  Now that Jill is past the half way point of chemo, someone commented that we were on the downslope.  At first I sort of agreed.  But in reality, that is not the case.  Make no mistake, the progress so far has been awesome.  The support we have had has been awesome.  Jill’s attitude has been awesome.  But my mind snapped back to the fact that we have a long 2011, at best, ahead of us.  Feb and March will be chemo.  April will be recovery.  Then Jill has 1-2 surgeries to remove the impacted breast and lymph nodes.  Then the plan gets a little foggy, but I suspect it will be radiation for 6 weeks, some recovery and then more surgeries.  Other breast, maybe other lymph nodes, and then ovaries.  After all that recovery, she will have reconstruction at some point.  Many people wait 6-12 months for that just as they are totally done with going through all this.

Even with that being the case, we are continuing to only focus on the moment.  We have been doing a good job with that and will continue.  I have been saying something to myself a lot lately – fear, pain, sadness, and grief are not savings accounts.  Worrying about 6 months from now, or even 6 days from now, does nothing to lessen the blow should something happen down the road.  

Bring the pain

Sorry for the delay in update after her treatment on Thursday.  I have been so busy . . . with things like making Brett Favre on Dancing with the Stars twitter jokes . . . and some work and house chores. 

Jill had her first “t” treatment – Taxol – this past Thursday.  Her first 4 treatments were the “a” treatments – Adriamycin -  The last 4, “t”.  Taxol is supposed to not have the nausea that the “a” series had and so far, that is 100% accurate.  Jill has been so excited that she was not stuck on the couch for the days after the treatment.  However, Taxol carries with it pain.  Aching, joint and general pain.  As of last night, it started.  She thought her hands hurt because they were so dry.  Now it looks like it is just the pain.  She is having a good deal of pain and difficulty doing things with her hands (like opening things, tying shoes, etc).  She just took 2 Tylenol.  She has a script for Vicodin.  We will see if she needs it.  One gal she met said that after 2 of the 4 Taxol treatments she went to the Oncologist and said ‘no more treatments’ because it was so unpleasant.  Fortunately, she was talked into finishing.  I have already told Jill I will not allow her such talk.  .  And that I would carry her in myself if need be.  Of course, everyone is different, so maybe Jill will not get that bad. 

Feb 9 update

We have been quiet simply because there has been nothing to report on Jill’s road to recovery.  She has felt good the past few days and has been able to work, take care of the kids, etc – live a normal life.  Tomorrow she has her 5th Chemo treatment, and the first of the 2nd protocol.  The only thing we know is that this one takes longer to administer.  6 hours instead of ~3.   We have no idea if this treatment will be better or worse as far as side effects. 

On a side note, while Jill’s road has been quiet this week, others have not been as lucky.  As we detailed before, Jill has tested positive for the BRCA gene mutation, aka – breast cancer gene.  I am not going to get into the big picture of everyone who might be impacted by this knowledge, but one of her sisters has also tested positive for this gene.  Lyndsay has made this known via Facebook, so I am comfortable putting it out here.  She has some tough decisions to make, so please keep her in your prayers.  See her on facebook for more details.  

Snow days update

Jill has really had her energy return in the past few days – in fact, I would say she has been as close to pre 12/2 Jill as we have seen yet.  Of course this comes after some of her worst post treatment days, but everything is a balance I guess. 

I think the entire house has cabin fever . . . but I am at work today, so I got a pass.  .  Jill is going to the airport today with her mom to pick up some kids (mail order).  Actually, Pam is watching a few of her grandkids while Jill’s brother goes to Dallas to watch that little game on Sunday night. 

Jill and I are really hoping that the groundhog’s prediction is correct . . . Jill would love the ability to get outside every now and again.

Until next post . . .

Long days . . .

The weekends in which Jill is not feeling well are so long.  Yesterday as an example.  We are up by 7:00 or so.  Holly has spent the night at a friends, so she is not there.  Lauren comes in our bed around 6:30 and we sit there for a while.  Then I make breakfast for everybody.  Then I clean and declutter the kitchen.  Jill sits on the couch not wanting to move much to avoid feeling sick.  Holly comes home around noon and I make lunch for everyone.  Then Jill and I help Holly with a school project.  Then we all do various things.  Around 4 both girls go over to my moms to spend the night.  I work out, then shower.  Jill and I watch the Blindside.  I play on computer.  We read in bed.  Not going anywhere makes the days feel so long.  I cannot imagine what the days feel like to Jill.  Ugh.  At least I am able to clean, walk around, workout, etc.

I asked Jill what I could do for her yesterday and her answer – fast forward time.  She tempered that with saying she never wants to wish away time, but of course part of her wants us to be at the end of this road.  That made us think about the road ahead . . . and all the details yet to unfold this year even on a best case scenario.  That quickly made us realize that living in the now is the way to go . . . one day at a time as we say.

I am not sure why, but I think yesterday was the hardest for me since the first week or two (which were terrible due to the unknown parts).  I feel recharged today, which is good.  Sun and fog this morning got me outside to take some pics (I will post soon) and allowed me to play with a new photo post production tool, which engaged my mind. 

To be honest, on the weekends where Jill is sick – I prefer the weekdays as I get to go to work.  Selfish I know, but Jill is always with someone (or I come home).  Again, I simply cannot imagine what Jill is going through or how slow this has to be moving.

4th treatment update

Yesterday Jill had her 4th of 8 total treatments, and the last of the first protocol.  She was not feeling very good this morning when I left, but was going to get some help from her sisters and my mom today.  If this goes like the last one, the next few days will be fairly rough for her. 

The doctor said that the breast tumor had shrunk so much that he had to use the biopsy scar to find it.  The medicine continues to work. 

1/24/2011 update

No real news to report.  Jill felt good this weekend and was able to spend some time with her family.  Her brother’s family was in from Ohio.  Our Nephew was baptized Sunday morning as well.  We received both our bi-weekly Goodies for Golightlys and a rather large home made pizza dinner this weekend.  And our daughter’s cleaned up the house last night!!! 

Jill should continue to feel decent until her Chemo this Thursday, her first at the Breast Center at St.V’s.  That should be her last treatment of the first protocol (4th of 4).  2 Weeks after that, she will start her second protocol which is also scheduled to be 4 weeks.  We are of course very curious as to if this second treatment will have more or less side effects.  The only thing we know is that it takes 6 hours.  That means with the other stuff (check in, meet with Oncologist, exam, etc) that this will realistically be an 8 hour day for Jill.  Ugh.  But we keep reminding ourselves to try to live in the moment and just deal with today . . . and not worry about something 3 weeks away.

Until next post . . .

Holly girl scout cookies

So many have helped Holly with her Girl Scout cookies – wow.  I think she is around 300 boxes sold or something crazy.  It turns out that having a mom with breast cancer help move cookies. 

Anyhow, we all really appreciate the extra effort by those around us – both those who have bought and those who have help her sell (and those who have flat out sold FOR her). 

1/17/11 update

No real news to report, but wanted to make sure we were not silent (as that can seem bad).  Jill has been more nauseous and tired after treatment #3 than 1 or 2.  Part of it is that I think she is starting to tire a bit of the entire thing.  Like anyone, any challenging process will have an ebb and flow on a person’s attitude, patience, etc.  Jill sat around a bunch this weekend (and today) and is getting rather bored.  She did get out to church and then Holly’s Futsal game.  But that was about it. 

She should start feeling better this week.  Her next treatment is the 27th, so she should end up with a week of feeling fairly good – but you never really know.  One day at a time, right?  He brother and his family are coming in this weekend, which will be nice. 

Thanks again to all the meals and help this week!!!! 

Sincere thanks to so many

Sorry . . . lots of posts today in a short bunch.

I am struggling with showing the appreciation for those around us.  Let me explain.  I am so overly thankful I just want to go on and on about what people have done for us.  My issue is that we are already at the point where we cannot keep up with it all.  I hesitate to post notes of gratitude as I will miss people, and I will miss people that helped up out in some significant way at a real cost of their own time and money.  I absolutely do not want to hurt any feeling by leaving them out or by thanking someone for the wrong thing.

I am going to do this generically.  More than anything, I want to thank you all.  We will never be able to repay this debt of love, support, and effort.  Never.

Many people have brought us meals - 2 per week for several weeks now.  All meals have been between great and awesome.  Meals have fed us for days.  Meals have had treats (in addition to the every other week treats on Saturdays).  This has made my eating healthy a bit hard, but has made Jill's directive of 'just eat' easier!  I will say that there was a box of cookies that literally gave me a beat down.  Every time I walked by they overpowered me!  All of this has taken time and money to make and deliver.  WOW is all I can say.

People have taken my kids everywhere . . . to one place, home from another, etc.  This has done more for me than anyone to be blunt.  This has allowed me some Greg time and time to do things like clean and organize the house and work on my blogs.

Our driveway has been cleared multiple times.

Out house has been cleaned.

Let me end with this - there is not a single thing that has been done for us that has gone unnoticed.  There is not a single thought or prayer that we are not grateful for.  And I know I will be writing this stuff over and over for the coming months.  I want everyone to feel good about helping us.  It makes a difference.

Jill's Q&A with the Oncologist yesterday

Jill had a sort of FAQ with the Oncologist yesterday.  He had told us up front that we will hear a enormously wide range of advice . . . and that we should always nod politely and take with a grain of salt.  He said that everyone is different and every cancer is different.

Jill can eat anything she wants.  His number one concern is that she eat to keep her strength.  Yeah, healthy would be better, but eating anything is #1.  Fresh fruit and veggies are okay, but should be washed.  Jill can drink alcohol, though she really does not to begin with.  Sugar does not 'feed cancer' any more than it feeds the rest of your body.

She is able to see people, even people from out of town, with the exception of her bother's family in Ohio, they always get someone sick.  ;)  She should avoid contact with clearly sick people.

In other words - she is to live a very close to normal life.

This post, like most, are from me - Greg - but this last part is very clearly my editorial.

I am so glad she is able to live as close to normal as she can.  I think she is really finding a groove of understanding some days she is just not herself and that she needs to rest.  Others she can do much more - but also that she needs to not go 100% even if she feels like it.  She is really doing good at working within her limits.  And doing less at home.  But she still helps out when she is feeling up.  I think her and I are starting to feel this . . . she does a bit more to help me when she is well and then knows she has to move to more the passive role from time to time.

Updated course of action

FYI, the doc said, in the big picture, Jill's treatment plan is still the same:  Chemo, recovery, surgery, recover, radiation, reconstruction.  He did want to make sure to set our expectations in that the surgery will be several surgeries.  Like a breast at a time then the ovaries.  Post chemo you are weaker and it is better to stick to shorter surgeries.

He was very encouraged with the results of the treatment so far and with how Jill was feeling.

Breast Surgeon appt update

We met briefly with the Breast Surgeon today.  He was all business.  :)  He did a manual exam and an ultrasound to check the tumor.  The ultrasound has it under 2cm.  Yeah.  So the ultrasound and two doc's manual exams say it has shrunk in half or better after 3 treatments (2 really, the 3rd was just yesterday).

Jill is a bit more nauseous in her day 1 and 2 post treatment this time, but not terrible.

She is off to get he shot to boost white blood cells now and then will rest this afternoon.

Chemo session 3, tumor has shrunk

Jill is currently at the oncologist's office getting chemo.  The doc said her tumor has shrunk and is now about half the starting size.  This is what the surgeon said . . . that we would be stunned at how fast it will shrink in the first month.  We are stunned.

Holly’s U8 Academy (soccer) team is wearing pink

Today was Holly’s first Futsal (indoor soccer) match.  Unbeknownst to Jill, the team parents and coach decided to have pink jerseys made for the team for the futsal season.   Many parents also bought these pink shirts.  Jill was really surprised and the gesture meant so much to her and all of us. 

Thanks team!!!

A clean bathroom

Some magic elfs came over on Friday and cleaned out bathroom.  How awesome is that?  Looks great.

1/6/11 update

Jill is feeling fairly well.  In fact, she basically was active all day today with no nap.  No new news to report on her cancer, treatment, etc.  Tomorrow we meet with the geneticist.  We will have an update after that.  We have a somewhat busy weekend ahead of us – but so many people are helping out with transporting kids that Jill should be able to rest and I should be able to get some stuff done around the house.  I have more cleanup and organization I want to do.  I have shelves, some bins (in, out, to be paid, to shred, etc), and a scanner (to scan documents, kids schoolwork, and so on to reduce clutter).  And somewhat of a plan.  I have taken over our on-line bill pay efforts as well. 

One huge upside of this process is how it gives one a bit more clarity as far as what is important and essential.  I am currently reading some books on the topic, along with internet research, and have started to try to pin down my personal core values.  Here is my blog (yeah, I have a blog too) post on the topic  http://www.golightly.us/?p=22

Jill went to work. Bald

Today Jill overcame her fears and doubts and went to work sans hair.  I am not sure if she ended up wearing a wrap or a hat (I left before her), but she went.  She went and worked.  Yeah Jill!  She put in a decent amount of hours and then came home and took a nap.  She is doing well tonight – currently playing board games with the girls. 

Those around us keep giving us so much love and support.  Meals, driving the kids, etc – they all help so much

our kids - so great! Will you let them know?

Our kids have been helping out around the house.  Holly has been making her own breakfast and doing Lauren's as well.  Lauren has helped out from time to time too . . . about as much as can be expected from a 4 year old.  If you get a chance, give the girls a call and tell them what a great job they have been doing.

Shaved pics

http://photo.baldphotog.com/Other/pinkforjill/15038425_nXgJ3

Meet the Golightly's, a bald couple

I shaved Jill's head this morning.  The girls helped cut some of the hair and we did it as a family.  I will post pics in a few hours.

She looks great!