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.