Update 17.5

Update 17.5

So many of you have been very thoughtfully thinking of me today and wondering how things went this morning! 

To quickly update you - I had a substantial allergic reaction to the Taxol within minutes of them starting it in my port.  In a matter of 2-3 minutes my chest tightened and then quickly got to the point where it felt like an elephant was sitting on me (what I imagine a heart attack would feel like), then I felt extremely hot (as if my body temperature almost doubled) and my entire head turned Christmas red and next my throat started to itch. I became a Code: Emergency and a whole bunch of new friends quickly appeared in my room with a crash cart; nurses, a doctor, a pharmacist…good people!  The nurse that was already in the room watching me for a reaction immediately stopped the flow. I was given more Benadryl, Pepcid and steroids, pronto. 

So, no more Taxol for me. 

They know people can be allergic to Taxol and that's why the nurse was staying so close by and watching to see how I would handle it.  As soon as I returned to normal, I was able to receive my first full dose of Herceptin, which was uneventful. 

We are back at the stage of forming a chemo plan. We are looking at Taxotere, which is unrelated to Taxol and doesn't carry the same reaction risk and also carries a smaller chance of developing neuropathy.  Instead there are aching bones and possible redness/burning of the hands and feet for a few days after- neither a potentially permanent side effect like neuropathy can be. The Taxotere plan would most likely be weekly for 12 weeks as well, starting next Tuesday, but we're researching it.  

We'll let you know next week what new plans are in place. 

Update 17

Update 17

We had a great Christmas and I think we succeeded in having it feel "normal," which the boys were really longing for- even expressing to Santa in letters that we have had "a rough couple of months."  Hope, generosity, gratefulness, kindness, perspective…these are big themes of the season for us and every season because we follow Dickens' good advice to "keep Christmas well" in our hearts throughout the year. 

My port incision is healing nicely.  The port itself is barely visible under my skin and I don't really feel it at all unless I turn my head in just the right way.  Tomorrow during my first chemo & Herceptin treatments will be the first time it is accessed. I have numbing cream to prepare the skin for that.  

I chopped my hair today to a short pixie cut so we can all get used to short hair Sarah/Mom before bald Sarah/Mom.  It felt good to exert some control over something but I do now feel like I have an audition for Peter Pan tomorrow and I kept standing tall with my hands on my hips tonight. :)

My first treatment will get started tomorrow morning around 8:30.  I don't know exactly what to expect because reactions to everything they'll pump in me are so personal and varied. The best way I can describe the feeling of yesterday and today is unsettled. As a proud graduate of the D.A.R.E. drug education program circa 1990, I kind of feel like I am saying yes to drugs.  I have never so much as held a cigarette (nor have I ever been offered one or anything else more potent) and here we go authorizing the pumping of toxins directly into my bloodstream. It's an odd thing to anticipate and I hope I don't get caught just saying yes. Just kidding.  But truthfully, knowing what it does to you and imagining willingly sitting yourself down for the IVs is a little surreal.

I do know this, and I'm paraphrasing this from another: 

Hardships might shake your core and knock you to your knees, but when you stand again, you stand with something you didn't have before.  

This family will have cancer behind us, camaraderie & compassion between us like most little boys don't witness before their eyes, and a crazy zest for all the days of life, good and bad, we're gifted. 

As soon as we start, we're on our way to finishing, so I'm ready to go and really hoping I remember that numbing cream in the morning... 

Update 16

Update 16

Both chemo education appointments went well and Joe and I are making sure both St. Luke's Oncology and LMH Oncology have results from each other's blood work, procedures, etc… so we are all on the same page and nothing is missed.  

On top of what I listed in the last update for this week, an echocardiogram for baseline information regarding my heart function was thrown in late in the day yesterday. Results look great and the tech said I had the best looking heart she's seen all week. I was a good 50 years younger than every other patient in the waiting room but I am choosing to still feel good about that compliment.  (My heart function has to be monitored over the course of the year long Herceptin treatment because heart function can sometimes decline with this drug.)  It was the first echo I've had and involved the injection of contrast dye and a long, painful period of laying on my side for the first time since surgery in November while an ultrasound wand was pressed all around my aching chest while I took deep breath after painful deep breath.  Very cool to see and hear my heart working, but I think echocardiograms are probably more fun when you haven't just had major chest surgery. 

Today's port placement went "exceptionally well" according to my surgeon when he updated Joe in the waiting room.  They didn't have to poke around for a good fit, it was a textbook scenario and placed quickly with ease, which should mean the best possible outcome for me. Before they took me back I told the doc I wanted this to be the most comfortable port he placed in all of 2015 because I don't get it out until after next Christmas! I don't care how visible it is under my skin (right near my collar bone) but please oh please let it not bother me. So far, with pain meds on board, all I've felt is a strong stinging sensation right along the incision.  Ice packs are helping with that and it will pass and I should be good to go. 

The only thing we have planned for next week is enjoying Christmas!

I am currently scheduled for chemo treatment #1 on Tuesday, December 29th.  

Before 2016 starts, I'll already be 1 down, 11 to go!  

Update 15

Update 15

Time is flying and we continue to put one foot in front of the other through this treatment process. There's no way out but through.

Today I have a short appointment at Lawrence Memorial Hospital (LMH) for chemo education, during which I will learn more about the specific drugs, Taxol & Herceptin, that I'll take and what to expect during and after treatment.  My oncology team so far has been entirely centered in the St. Luke's hospital system, which is in Kansas City and about an hour away from our home. We are trying to coordinate my weekly chemo infusions to be closer to home at LMH for simplicity and convenience. 

Tomorrow we meet again with my plastic surgeon to check on the reconstruction progress. Last week's reconstruction appointment threw me for a loop with regard to pain and discomfort and almost a week later I am still not comfortable (to put it mildly). The impact of this process on the skin and muscles of a woman's chest (and what feels like sides and back and everywhere!) is enormous. I am simultaneously amazed and thankful at what modern medicine can do and pained greatly to watch it play out in my own body.  We might choose to put this process on hold for now to avoid sitting at maximum discomfort levels through all 12 weeks of chemo, plus 4 recovery weeks after chemo ends, before final reconstruction surgery is possible anyway. 

Thursday morning we will have another chemo education appointment, this time at St. Luke's.  Immediately following that, I will have a port placed by the same surgeon that performed my double mastectomy.  This is done under general anesthesia, which is my favorite, and should take about an hour and require about an hour in recovery after the quick surgery is complete.  I will have this port in for a year because of the Herceptin treatments that have to continue after I'm finished with chemo so I'm crossing my fingers it is comfortable on some level at or near tolerable. 

That brings you up to speed with me but I want to end by sharing the delightfully precious news that my 3rd niece, Catherine Everly, came into the world last night and stole our hearts. Everly is pictured below.  The lows in life can be pretty painful but oh my goodness, the highs are really something. Hang onto them with all you have! 

Thank you, thank you for your support and well wishes. The cards, emails, thoughts, prayers and good vibes- we love them all. 

Update 14

Update 14

My oncologist is thrilled with my pathology reports and granted our wish to take the time between now and Christmas to further heal so no chemo before Christmas!  Soon after, I will start weekly treatments.

My chemo drug will be Taxol and I will have it weekly for 12 weeks, administered through a port that will likely be put in next week sometime. I will also be treated with Herceptin each time I receive Taxol and will continue Herceptin every three weeks after Taxol is done so that I receive it for a year total. Taxol is a mild chemo drug as far as toxicity goes and is generally very well tolerated. Hair loss, extreme fatigue and neuropathy are what I am to expect for side effects. 

I'm excited for a Christmas that should feel pretty normal and ready to begin the end of this cancer business right after that! 

Update 13

Update 13

This afternoon I had two week follow-up appointments with both surgeons that worked on me on Nov. 18th: the oncology surgeon that performed the bilateral mastectomy and the plastic surgeon that began the reconstruction.  Both appointments went very well.  I am healing just as expected and both are pleased with my progress and relatively low pain levels. My oncology surgeon is thrilled that I chose a bilateral mastectomy as he found lobular carcinoma in situ in my "normal" breast and it would have been a worrisome concern we would have needed to monitor constantly/consistently. 

The plastic surgeon was able to remove the last 2 of my 4 drains today and this time I took pain meds ahead of time.  That, combined with the fact that the drains were not positioned against nerves, made the removal an order of magnitude more tolerable.  (I didn't wretch and scream this time.)  I need to let the drain sites heal and take it really easy for the next week so I'll back off the PT exercises I've been doing to maintain and increase range of motion.

I have extensive bruising from all my chest skin is going through and I was reassured today that the bizarre coloring of the bruising isn't worrisome and that my incisions look great. 

My oncologist had a family emergency so we did not get to start planning my chemo regimen today but we have rescheduled with him for tomorrow afternoon and will discuss chemo plans at that time.

Not overdoing it and trying to get and stay comfortable (when sleeping, sitting, standing and every position in between, hah!) are my main goals right now.  We have experienced overwhelming kindness in the form of people bringing meals and their thoughtfulness has meant the world to us.  It isn't just a gift of food but a gift of unhurried time together in the evening and getting to connect with each other and our boys is so important to us right now. 

Our village is huge and many have mentioned how strong I have seemed through this- that is directly attributable to the support of Joe and my parents thinking of every little neurotic thing I do for myself and this family and taking care of it for me (If you know me well, this is no small task).  How people make it through without a husband and parents like mine is beyond me. They are my glue and the reason this train is still up and running and in good spirits, albeit making stops at all these unplanned stations! 

Please use my story to encourage all the women you care about to get mammograms in their 30's and to get them every year. "We've caught it so early" are such sweet words to hear when you are told you have cancer. 

Thank you for your continued support- we know we are thought of so often and it is deeply appreciated. 

Update 12

Update 12

I have so many thoughtful people checking in to see how things are going but I have no news from appointments or test results as it has simply been a week of healing.  I will quickly update you on how I've been feeling. 

"I took a shower washing every body part with actual soap; including all my major crevices; including in between my toes and in my belly button, which I never did before but sort of enjoyed. I washed my hair with adult formula shampoo and used cream rinse for that just-washed shine. I can't seem to find my toothbrush, so I'll pick one up when I go out today. Other than that, I'm in good shape."  
{Name that Christmas movie.} 

In all seriousness, I am proud to report that yesterday I really did take my first unassisted shower (post recent surgery) which included washing this mess of curly hair by myself and I clocked in at less than an hour!!  I did have to call on Joe for assistance with drying off due to some hyper sensitive incisions and drain accesses, which, when it was all said and done, involved about about 27 wash clothes and hand towels plus a long period of time in front of a hair dryer set on low that looked something like this only without the dress or Joan Cusack for comic relief: 

Two hours later and I was good to go!!

Soreness from the expanders  that were placed under my chest muscles during my mastectomy is a daily nuisance but thankfully tolerable at this point because they aren't very full yet. They are balloon like and will eventually become hard, literally, to deal with as they force my muscles to stretch. All of my pain during the last few days has been easily controlled with ibuprofen and acetaminophen.  Sleep has been great thanks to some foam wedges  from Amazon until last night when I just could not get comfortable. I hope shedding these last two drains on Wednesday will make a big difference there. 

Next up, late afternoon appointments on Wednesday with both surgeons and my oncologist.  

I will definitely let you know where things stand after that!

Thank you all so much for caring and for rooting for me. It always feels good to have a team of supporters, no matter your fight! 

Update 11

Update 11

Today we received the wonderful news that the lymph nodes taken during surgery on the 18th and sent for additional testing are officially clear according to the final pathology report!!  It seems this plants my breast cancer firmly in Stage 1. 

There were some abnormalities in the tissue from my left breast (Lobular Carcinoma in Situ- LCIS) that make him confident that removing all the breast tissue on both sides was the right choice for me.

The surgeon was able to remove two of the four drains I came home from surgery with; it is 100 times more comfortable having them out.  I was not well-prepared for the pain of their removal, however. Yikes! 

Next up:  post-surgery appointments with both surgeons on December 2nd.  The remaining two drains should be removed at that time and we will hopefully finalize a chemo plan and determine when my port will be put in. 

Thank you, everyone, for your continued interest and support.  We feel the immeasurable love and comfort!

Updates 1-10

Update 1 

Every 19 seconds a woman is diagnosed with breast cancer. 

On Wednesday, October 21, 2015, one of them was me. 

I was diagnosed with invasive ductal carcinoma in situ (DCIS), ER+, PR +, HER2/neu+. 

This was found early and my prognosis is excellent.  I'm 35 years old.  I don't have any first or second degree relatives with breast cancer.  No lumps were ever detected.  I had an abnormal mammogram, returned for a second scan, had a biopsy done and then received my diagnosis. Mammography saved the day. 

PLEASE get mammograms annually as an adult (or urge the women you love to do so); every single health professional we have encountered in the last 2 days is furious with the new recommendation to wait until 45 to begin.  GO NOW. 

My treatment plan will include surgery, reconstruction, chemotherapy and Herceptin.  Herceptin will be over the course of a full year. 

My next appointments are on Tuesday. I will have an MRI and an appointment for genetic testing. We will know results from the MRI this week.  It will take 14 days to hear results from the genetic testing.

We are hoping this will be a convenient place for our many supporters to get accurate information first hand. We have had many offers for help and we know we'll take people up on them in the coming months.  The first thing you can do for us is to go get a mammogram or urge someone you love to do the same.

Update 2

This morning I had a bilateral breast MRI to determine if there is any other questionable tissue area that might need to be biopsied before we move forward with surgery.  I will share results from that when I have them but I was told that they were able to obtain great images. If there's anything else to see aside from the original cluster of microcalcifications, they should have no problem seeing it. The MRI was very loud. They had me positioned on my stomach with my arms at my side and they communicated with me throughout. I could not communicate with them, however, aside from a panic button placed in my hand for emergency use.  That's right, I had to go 20 minutes without speaking. I think we all know that was the hardest part for me.

After the MRI, we met with a geneticist to have blood drawn for genetic testing to see if I am positive for either BRCA1 or BRCA2, among other gene mutations. We were told there is a < 5% chance that I am positive for those mutations. If I am positive for BRCA1 or BRCA2 it will be important to consider elective removal of ovaries, etc...  Results from the genetic testing will be available in about 14 days.

The fun didn't stop there.

We met with a plastic surgeon this afternoon to discuss reconstruction after bilateral mastectomy. There are a few ways to go about reconstruction so we learned about our options and the timing of them with regard to chemo and radiation (if radiation is indicated).

While I was in the MRI holding my tongue for a PR of 20 min, I was thinking how nice it is that so many inspiring, hope filled stories come pouring out of the woodwork with a cancer diagnosis.  In the last few days I have been connected with some strong, sincere, candid young women that have traveled this road before me and their help has already been a real boost.  People get through this all the time and many without a fraction of the support I will have. I am so thankful for the kind people in our life, family and friends alike. We have an impressive village!

I will check back in with MRI results, BRCA results and surgery dates as they become available.

Thank you all for your support, I'm a lucky woman!

Update 3

My MRI is clear!  Nothing suspicious visible and no sign of enlarged lymph nodes.  A post-biopsy hematoma could be seen and that's normal.  Our next step is to get surgery scheduled.

I am pleased to report that 10 women under 40 that I know have had a mammogram since I shared my diagnosis with them!  Imagine what catching every patient at Stage 1 would do for the fight against breast cancer.  Brave ladies, to walk in there when someone they know is right at the beginning of this mess. I consider every mammogram someone doesn't get a false negative; just because you aren't looking doesn't mean nothing is there. You just don't know unless you go.

Update 4

Surgery is scheduled for Wednesday, November 18th.  It should begin at noon and last around 5 hours.  Joe will update after the surgery so that all of you know for sure it went well.

Between now and then we should receive genetic testing results.

Update 5 

We just heard back from the geneticist and I do not have any gene mutations for breast cancer!
Negative for both BRCA1 and BRCA2 mutations.

I am thrilled with this result and excited to get on with the bilateral mastectomy next week so we can investigate my lymph nodes and hopefully hear good news about them as well.

Surgery is November 18th and is set to begin at 12 and last approximately 5 hours.

A wonderful friend has set up a meal calendar for us and we are forever grateful.

Thank you, everyone, for your love and support. We feel all the good vibes you send our way.

Update 6 {by Joe)

The surgery is over!!!  Both parts went as well as possible.  The cancer surgeon removed three lymph nodes, all of which were negative.  The reconstruction went equally well, as the surgeon was able to get a fair amount of fluid into the tissue expanders.  We will see Sarah in about an hour.  I will post again later tonight.

Update 7 {by Joe}

Everything continues to to go well.  Sarah got to her room about 7 PM.  She got a round of pain meds and slept for a little while.  She got up (slowly) and went to the bathroom and did very well.  She is in a very good mood and got to talk to the boys (which did wonders for both her and the boys).  She is very pleased with her pain levels.  We are all very comfortable and getting ready for a great night of sleep.  Thanks again for all the support and messages.

Update 8 {by Joe}

Sarah rested very well last night.  The pain meds are working well but making her very tired.  She is starting to slowly get back her appetite.  When she is eating well, she can switch to oral pain meds which should make her feel more alert.  We have been given the option of going home today or staying one more night.  Will see how she feels later today.  I will send out anther update later.

Update 9 {by Joe}

I am thrilled to inform you Sarah progressed very quickly this afternoon and we were able to come home.  We arrived at roughly 5:15 and she is already comfortably watching a movie with the boys.  

We can’t begin to thank everyone enough for the support.  The best Sarah quote from our little two-day getaway was “We sure do have a huge support network for such a tiny piece of cancer.”

Update 10

Thank you, everyone, for all the support and well wishes this week. We have been buoyed by all of your positivity.  As Joe updated, surgery went very well and I am already home resting comfortably.  I'm not having any trouble sleeping on my back thanks to two big foam wedges along with a foam knee wedge. (I should also give a shout out to Percocet at this point.)  My appetite is good and my complexion is back to normal according to everyone who saw the blood drain from my face a time or two.

Joe has been a huge support managing all my meds and taking care of 4 surgical drains I came home with.  My first post-op appointment is Tuesday, Nov. 24th, and I will probably have 2 drains removed at that time.  On Dec, 2nd,  I'll have my second post-op appointment and hopefully the last 2 drains will come out at that time.

We have already had a few meals delivered and it has been wonderful!  Our focus has been so narrow that we don't even realize time to eat has rolled around again until the food is placed in front of us!

Joe and I are immensely grateful that we have my parents close by as a support we can fall back on over and over again.

We will let you know how the first post-op appointment goes.  Lymph nodes looked clear during surgery and they sent three out for testing for good measure. We should hear about those next week.

As recoveries go, I am feeling really good- physically and emotionally- and I know I'll improve little by little over time if I follow doctor's orders!

Thank you all so much for caring about us!

Update 9

I am thrilled to inform you Sarah progressed very quickly this afternoon and we were able to come home.  We arrived at roughly 5:15 and she is already comfortably watching a movie with the boys.  

We can’t begin to thank everyone enough for the support.  The best Sarah quote from our little two-day getaway was “We sure do have a huge support network for such a tiny piece of cancer.”

Update 8

Sarah rested very well last night.  The pain meds are working well but making her very tired.  She is starting to slowly get back her appetite.  When she is eating well, she can switch to oral pain meds which should make her feel more alert.  We have been given the option of going home today or staying one more night.  Will see how she feels later today.  I will send out anther update later today.

Update 7

Everything continues to to go well.  Sarah got to her room about 7 PM.  She got a round of pain meds and slept for a little while.  She got up (slowly) and went to the bathroom and did very well.  She is in a very good mood and got to talk to the boys (which did wonders for both her and the boys).  She is very pleased with her pain levels.  We are all very comfortable and getting ready for a great night of sleep.  Thanks again for all the support and message.

Update 6

The surgery is over!!!  Both parts went as well as possible.  The cancer surgeon removed three lymph node all of which were negative.  The reconstruction went equally well, as the surgeon was able to get a fair amount to fluid into the tissue expanders.  We will see Sarah in about an hour.  I will post again later tonight.

Update 5

We just heard back from the geneticist and I do not have any gene mutations for breast cancer!
Negative for both BRCA1 and BRCA2 mutations.

I am thrilled with this result and excited to get on with the double mastectomy next week so we can investigate my lymph nodes and hopefully hear good news about them as well.

Surgery is November 18th and is set to begin at 12 and last approximately 5 hours.

A wonderful friend has set up this meal calendar for us and we are forever grateful:

http://www.takethemameal.com/meals.php?t=UUTY5841

Thank you, everyone, for your love and support. We feel all the good vibes you send our way.

Update 4

Surgery is scheduled for Wednesday, November 18th.  It should begin at noon and last around 5 hours.  Joe will update after the surgery so that all of you know for sure it went well.

Between now and then we should receive genetic testing results.

Update 3

My MRI is clear!  Nothing suspicious visible and no sign of enlarged lymph nodes.  A post-biopsy hematoma could be seen and that's normal.  Our next step is to get surgery scheduled.

I am pleased to report that 10 women under 40 that I know have had a mammogram since I shared my diagnosis with them!  Imagine what catching every patient at Stage 1 would do for the fight against breast cancer.  Brave ladies, to walk in there when someone they know is right at the beginning of this mess. I consider every mammogram someone doesn't get a false negative; just because you aren't looking doesn't mean nothing is there. You just don't know unless you go.

Update 2

This morning I had a bilateral breast MRI to determine if there is any other questionable tissue area that might need to be biopsied before we move forward with surgery.  I will share results from that when I have them but I was told that they were able to obtain great images. If there's anything else to see aside from the original cluster of microcalcifications, they should have no problem seeing it. The MRI was very loud. They had me positioned on my stomach with my arms at my side and they communicated with me throughout. I could not communicate with them, however, aside from a panic button placed in my hand for emergency use.  That's right, I had to go 20 minutes without speaking. I think we all know that was the hardest part for me.

After the MRI, we met with a geneticist to have blood drawn for genetic testing to see if I am positive for either BRCA1 or BRCA2, among other gene mutations. We were told there is a < 5% chance that I am positive for those mutations. If I am positive for BRCA1 or BRCA2 it will be important to consider elective removal of ovaries, etc...  Results from the genetic testing will be available in about 14 days.

The fun didn't stop there.

We met with a plastic surgeon this afternoon to discuss reconstruction after bilateral mastectomy. There are a few ways to go about reconstruction so we learned about our options and the timing of them with regard to chemo and radiation (if radiation is indicated).

While I was in the MRI holding my tongue for a PR of 20 min, I was thinking how nice it is that so many inspiring, hope filled stories come pouring out of the woodwork with a cancer diagnosis.  In the last few days I have been connected with some strong, sincere, candid young women that have traveled this road before me and their help has already been a real boost.  People get through this all the time and many without a fraction of the support I will have. I am so thankful for the kind people in our life, family and friends alike. We have an impressive village!

I will check back in with MRI results, BRCA results and surgery dates as they become available.

Thank you all for your support, I'm a lucky woman!

Update 1

Every 19 seconds a woman is diagnosed with breast cancer.

On Wednesday, October 21, 2015, one of them was me.

I was diagnosed with invasive ductal carcinoma, ER+, PR +, HER2/neu+.

This was found early and my prognosis is excellent.  I'm 35 years old.  I don't have any first or second degree relatives with breast cancer.  No lumps were ever detected.  I had an abnormal mammogram, returned for a second scan, had a biopsy done and then received my diagnosis. Mammography saved the day.

PLEASE get mammograms annually as an adult (or urge the women you love to do so); every single health professional we have encountered in the last 2 days is furious with the new recommendation to wait until 45 to begin.  GO NOW.

My treatment plan will include surgery, reconstruction, chemotherapy and Herceptin.  Herceptin will be over the course of a full year.

My next appointments are on Tuesday. I will have an MRI and an appointment for genetic testing. We will know results from the MRI this week.  It will take 14 days to hear results from the genetic testing.

We are hoping this will be a convenient place for our many supporters to get accurate information first hand. We have had many offers for help and we know we'll take people up on them in the coming months.  The first thing you can do for us is to go get a mammogram or urge someone you love to do the same.