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Up, down, ’round and ’round

August 29, 2018

I know I promised to post a while ago…but let’s just say August is a whirlwind!  The kids don’t want summer to end, but we have had enough ‘togetherness’ to last us at LEAST 6 months!  Swim team is over so they’re looking for adventure & entertainment wherever they can get it…and their favorite form of entertainment seems to be arguing with one another!  However we were able to squeeze in weeks at Plum Island, a whale watch and a trip to NH & Storyland, between the pokes & prods.  It hasn’t been all bad 🙂

One of the most difficult things with this diagnosis is balancing that feeling of wanting to soak up every minute and yet still managing every day life.  When I think about it, that’s a challenge for everyone, sick or not, but for some reason the feeling is heightened now. Of course my kids don’t truly understand what’s going on, so we’re trying to keep life as normal as possible.  Given the last sentence of the paragraph above…I’d say we’re succeeding…but THANK GOODNESS school started yesterday!  #FREEDOM! Well, almost, Scarlett is still home, but she loves her one-on-one time with me (and so do I).

As for how I’m feeling…I know it’s the big question.  The answer is, I’ve had my ups & downs.  The downs haven’t been unbearable, but they change up life just enough.  I had successfully been taking my meds for about 10 days before my first fever hit.  I went off the meds and recovered for about 3 days. The fever was manageable with tylenol, but I definitely needed to rest to get better.  And when I say rest, I mean I spent an entire day doing ABSOLUTELY nothing thanks to Andrew taking the kids to the beach.  But I came back 100% and went back on the meds.  Feeling great again I thought maybe that last fever was the same virus my kids had contracted around the same time (a hand foot & mouth variation).  If I could just make it past 10 days and feel healthy I’d be good…

Well, not so much.  At 10 days I got a low fever, went off the meds for a day & felt good.  They put me right back on, and I took some ibuprofen for just joint aches/pains.  I felt great!  2 days later…middle of the night…high fever & vomiting.  Did I possibly overdo it at Storyland, yes, I probably (okay mom, definitely) did.  But the doctors say I likely would have gotten the fever no matter what.  So I have been off meds since Friday night.  This time taking me a little longer to recover, but I’d say I’m just about there thanks to all of the help!

This time when I start my meds again, I will take a half dose of dabrafenib (Taflinar) and my normal dose of MEK.  Hopefully that will do the trick to keep the fevers at bay and yet allow me to stay on the drug.  The doctors are not concerned with me coming off the drug, it’s better to come off than push through as it seems to have no long term effect on the effectiveness of the drug.  Pushing through could certainly lead to more complications so I’m grateful this drug keeps doing it’s thing. I’ll keep doing what I need to do to ensure I can stay on it for as long as necessary.

As far as what else we know – that’s about it.  I have another echo-cardiogram scheduled for next week and my first CT Scan since my surgery on 10/15. That’s the big one…when we find out if anything has spread or if the surgery and these drugs are doing the trick so far.  I’ll be looking for an army of prayers & good intentions then…please!  Of course we won’t have results that day so I’ll let you know when that conversation is happening when it’s time. From what I can tell, melanoma will be with me for life…but we just have to keep kicking it when it’s down to keep it there!

To that point…if you’ll excuse me, I think I’ll go to bed now…and keep kickin’ melanoma’s butt!

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One week in!

August 7, 2018

One week of Taf/Mek down & so far so good!  I haven’t experienced any side effects yet and continue to go about life as usual.  Well, almost usual.  I now have timers set on my Fitbit to alert me when it’s 8AM/PM (stop eating) and 10AM/PM (take meds). Oddly enough I don’t need an alarm for 11AM/PM to tell me I can eat again…the stomach let’s me know that…ha!  Honestly though, it hasn’t been too difficult to manage and I hope I continue to feel as well as I do.

In the mean time I’ve been spending time with the family at Plum Island, kayaking, reading and even swimming in the ice cold water.  I’ve collected a good bit of SPF clothing at this point.  While wearing long sleeves on the beach isn’t ideal I’m happy that I can still be out participating in things I love!  I’ve never been much of a fashion statement on the beach anyway so no need to start now. 🙂

PT is going well and it’s AMAZING how far I have come! I have full range of motion and can even shave my armpit (carefully). I only have a few more sessions and well…I think I’m gonna miss it!

Not much else to report today.  I return to MGH in a week for bloodwork to make sure everything is in line.  Prayers I continue on the same path! And while you’re in the praying mode, would you add a few extra names to your list for me? It seems everyone needs a little faith boost these days, but these people in particular need some extra love. Since this is my blog I won’t share exact names, but Mr. CL, Mr. JP, and baby Molly with her family could really use some healing love! Thank you!!

Speaking of healing love…I was humbled this weekend to be on the shirts of more than one rider in the Pan Mass Challenge. It feels like not that long ago I was wearing other people’s names on my running shirts…and now here I am. It’s an overwhelming and beautiful feeling to be so loved. Thank you to Matt, Erik and Peter for including me and for all the riders who toughed it out through the driving rains and tornado warnings. You are my hero’s and I’m forever grateful for all the research that your hard work benefits! Maybe one of these years I’ll join you…but could you call in the fair weather that year?! 😉

More next week…until then…I’m off to kick melanomas butt! And stay cool in this unbearable heat!! 😳

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Pill poppin’ on the 12’s

July 30, 2018

Today marked the first day of my adjuvant therapy. An early trip into Boston with mom, some blood work, meetings with the nurse practitioner and the teaching nurse all culminating with the first dose down the hatch at 9:30AM. So far, so good. For the next year I will take 5 pills a day. 2 dabrafenib twice a day, and 1 trametinib once a day. Each round 12 hours apart and no eating for 3 hours as it must be taken on an empty stomach. It will be a pain, but it’s far better than just rolling the dice and hoping I don’t have a recurrence. I trust my doctor and know that this is the right thing for me.

There will likely be some side effects. The official site for my treatment (here) will make you cringe for sure. But after my visit today, fevers, aches & pains are by far the most likely. And the good news is that they can often easily be controlled by simply coming off the drugs for a bit while my body recovers or lowering the dosage if necessary. Because the drug combination is so new for stage 3 they are still trying to determine what dosage is most effective, etc. But I’ll happily be a science experiment if it means I can beat this thing…and we will!

If there’s one thing they made clear it’s that is I feel ANYTHING out of the ordinary, I call. First I call the doctor, then I call my mom, then we make a plan! Sometimes they may have me come in for blood work, other times they could just tell me to stop the drugs for a bit. We will just have to go with the flow & be prepared for anything. I wonder if they’ll get annoyed when I call about fatigue every day? 🤪 oh wait, that’s not really out of the ordinary. Being hyper sensitive to how I’m feeling is definitely strange for me, but it’s important so I won’t let anything go. (I promise mom!!)

Since I last wrote I’ve been keeping up with my PT and it has been amazing. Not only is it relaxing, I almost have my full range of motion back! The cording has all but disappeared and I have put my new electric razor to good use finally. Still strange that I can’t feel a thing under there, but I suppose I’ll get used to it eventually!

The last few weeks have been great…busy of course, but great! We filled our days with swim team and tennis lessons, multiple birthday parties, plays & concerts, blueberry picking and time with friends and family. (See photo proof below) I am grateful I have been feeling so well and tried to make sure I appreciated all the little things…even if I am at the point of the summer where I yell at my children most of the day. I swear it’s their fault not mine!

Honestly though, I’m thankful for the time. I’m blessed with a chance to be with them for all the little things…and the big ones too. I’m so lucky to have such an amazing circle of people in my life who have been there for me, Andrew and my kids. Every note, well wish, thought, prayer and hug are so appreciated! And the delicious food and help with a house cleaner have been a lifesaver even though I have been feeling well. It has allowed me to give that time to my kids and so thank you! I just can’t thank everyone enough for being on this journey with me and supporting me with love and faith! This year will bring challenges, but I know it will be worth it in the end. This week I will be enjoying these Plum Island sunsets even more than usual!

Now if you’ll excuse me, I’m off to kick melanomas butt…for good!

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Bullseye!

July 11, 2018

I know you have all been waiting for an update.  Today was the day!  The appointment went as well as could be expected. Surgically everything looks good!  I have some scar tissue that is causing cording and tightening of the muscles under my arm and continue to decrease my range of motion.  However I have been inducted into the world of physical therapy (aka. peaceful tranquility) and I have to say so far it is working!  An hour long massage session on that arm in peace and quiet…who can complain?  Of course I’m sure it won’t always be that way…but they’re being nice to start! 🙂

As for the oncology meeting, Dr. Lawrence is wonderful.  He sat down and explained what he recommended and why.  He also explained why he didn’t recommend the other option at this time. At the end he discussed how most hospitals/doctors across the country are likely to offer a different opinion, and that if we needed a second opinion he fully supports it.  His honesty and candor is refreshing.

Okay okay, I know – what’s the plan?  We are going to start with Targeted therapy (bullseye…get it?) designed to attack the pathways/cells with BRAF mutation.  If you are interested, the drugs that are approved for my stage (Stage 3C) are a combination dabrafenib (Tafinlar®) and trametinib (Mekinist®).  Great names right?  No I cannot say them, but one is called MEK for short.

What does this mean??  Well, it means I will be taking pills at home twice a day for 1 year with some strict restrictions about exactly when and how they need to be taken.  Side effects could range from nothing at all (wouldn’t that be nice) to strong flu like symptoms including severe fevers & chills.  The doctor said most patients experience some side effects.  But you just don’t know when or why.  I could feel fine one day and miserable the next.  I could feel mild symptoms for a week, I could also go about my daily activities like nothing is happening.  Unfortunately we just won’t know how I will be impacted until we try.  The nurses & doctors will work with me to manage the symptoms as best we can and I’ll just continue to pray for the easiest road possible.

Though Dr. Lawrence said many other doctors would recommend doing immunotherapy such as nivolumab (Opdivo®), he feels as though the targeted therapy is a great chance to eradicate the cells and possibly cure me of this disease.  It’s possible I already am cured since they took out all of the suspicious nodes…but there is still a chance that the microscopic cells are floating around in me…and we want them dead!  The short term side effects may be more harsh with targeted therapy, but the potential for long term issues is less than it is with immunotherapy.  This course of treatment also allows us to keep immunotherapy in our ‘back pocket’ should the targeted therapy not work…but it’s gonna work!

So there you have it!  I’ll be putting a bullseye on any of those nasty cells left inside of me and praying this drug does it’s trick without much pain or fuss.  Next up is an echo cardiogram (heart check) so they have a baseline to make sure I’m staying healthy, scheduled for 7/27.  The drugs will be hand delivered to me by a specialty pharmacy – aren’t I so special!  Then on 7/30 I will head back to MGH and get instructions on exactly how/when to take them and who to call when I’m experiencing side effects.

On Sunday I turn 39.  Without a doubt this next year will be filled with many trials. But with a lot of faith, a little luck and tons of support I know that by the time I’m rolling into 40 I’ll be just about done with this mess.  So thank you in advance for all your love, prayers and patience this next year.  I never thought I’d be looking forward to 40…but I’ve heard people say ’40 never looked better’ – and I intend to make that the truest statement yet!

Now if you’ll excuse me…I’m off to KICK MELANOMA’S BUTT!

 

#PIMPINJOY shirt courtesy of my cousin Heather…I’m doing my best!  #PIMPINJOY is a movement, a celebration dedicated to people who may be going through a rough time…but they choose to find and spread joy in their daily lives.

 

 

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I’m a mutant!

June 29, 2018

Can you believe it?!  After some gentle prodding from my very curious husband, I called the doctor today to see if the pathology reports had come in.  I was willing to wait until July 11 because knowing the results now won’t change the conversation that day.  However, it is nice to know that I tested positive for the BRAF V600E gene mutation (hence the mutant title).

What is this language I speak?  Well, it basically means that I could be a candidate for targeted therapy as well as immunotherapy.  If I tested negative my only option was immunotherapy.  And while that may still be the choice…let’s be honest, a girl likes to have more that one option! Especially when the studies on targeted therapy have been very promising.

Other details of note from the report – they removed 22 nodes – did you know everyone has a different number of nodes in their body?  Well I had 22 in my armpit…just in case you were wondering!  4 of those were clearly showing melanoma. The rest looked clear, but they don’t perform extreme screening of them at that point because it doesn’t change the prognosis or therapy.  Additionally, my melanoma is cutaneous melanoma, which means that most likely it started somewhere on my skin and not in my mouth, eyes, or other membrane.  The fact that we can’t locate the primary source and that it’s cutaneous means there’s a very good chance my body fought off the original site.  So kudos to my immune system for that!

As for my daily life since surgery. I’ve been doing well!  I’ve managed with just tylenol and haven’t taken anything for the last 3 days.  I have a handy new way of carrying my drain bulb around so I can easily hide it under my shirt.  Who knew I would need my running belt in a time where I’m not allowed to run!  But it’s been awesome and allowed me to go to the pool with the kids, relax at Great Brook Farm while they caught frogs and even get to a church meeting!

None of this would have been possible without mom/grandma – she does the laundry, dishes and even has time to chauffeur us around! We’ve had meal deliveries from Andrew’s parents on the regular as well as from close friends who feel like family.  The kids have had more entertainment than they can handle in the last two weeks – I’m not sure they’ve missed me at all! 🙂  Andrew has been a rock and even attended MY family reunion without me…kids and all!  Feel free to pat him on the back next time you see him!

Oh – there was one more thing I forgot to mention from today’s phone call with the doctor…and it’s probably my favorite part! Tomorrow (for Eli’s 7th birthday) he said I could come in & have the drain REMOVED!  This was originally scheduled for July 5th, but after talking to him today and explaining my drainage he said I’m fine to have it out and offered to do it himself! Next time you see Dr. Haynes from MGH walking the streets of Boston feel free to give him a big hug!  While I have found a way to manage with the drain, I’ve still been nervous to drive, and let’s be real – no one WANTS a hose under their arm draining stuff out of their body (insert vomit reaction here).  So yeah, the sooner they can take it out the happier I will be!

There is still more to come.  Recovery of my body from the drain removal. Continued rest and positive thinking to further heal from surgery and of course stay strong for what’s to come.  Through it all though I feel good.  I’m strong, healthy and feel blessed by one of the fiercest gangs of faithful and thoughtful people a girl could ever imagine.  God is keeping an eye on me and I’m relieved to give him my struggles in return for peaceful night’s sleep.  We’ve got this thing…I’m not worried and neither should you!

Now please excuse me…this Teenage Mutant Ninja Turtle is off to kick melanoma’s butt!  (I know I have Eli’s old mask around here somewhere ;))

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Eli on his 3rd birthday ❤️[
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Rest & recovery

June 21, 2018

A successful surgery is all I could ask for, and my prayers were answered! Dr. Haynes reported that everything went very smoothly and he was happy with how everything looked. Hallelujah!

Going into the operating room I was met with a wonderful collection of nurses…one of which grew up in Chelmsford (of course) so I knew I was in good hands. I don’t remember much after that (thankfully), but I do remember trying to stand up as they were waking me up…ha! Don’t worry, I didn’t.

It was an easy transition to the recovery room and my mom and Andrew met me there. After a LONG day of listening to the beeps & buzzes of the recovery area though, it was time to go home. Well that & Andrew and my mom were getting pretty punchy after hours at the hospital without much to eat! 😂. Honestly though I was feeling good & strong and knew a good nights sleep at home was better than a night in the hospital.

The kids were excited to see me the next morning and have been super careful with me. I think they’ve been pretty good for all the helpful adults too! Thank you to everyone who has helped & offered to help! We are forever grateful.

So what now? We wait, I recover and we continue to pray that they got all of the bad cells. My recovery is going well. I have a drain in my armpit to let the fluids out. It had been a kink in it, but we removed the external bandage today & it’s doing its thing. I’m sore in the shoulder, but otherwise okay and so far have been managing with just Tylenol. I do tend to get tired very often & easily, but I have been able to sleep when I need thanks to all the help. My next appointment is not until Wed, July 11th. That meeting is my post op with the surgeon where they will check on the sutures and possibly remove the drain. I will also meet with the oncologist and get pathology results to learn more about what (if anything more) they found hiding in there.

For now though, I’m just recovering like any other surgery. It’s slower than I want of course, but I’m being careful not to push it. The strangest part is that my body seems to be so busy fixing my armpit, my brain is a bit foggy. It seems I really can only do one thing at a time I guess. I did however, manage a shower yesterday, sat and watched Maya’s championship softball game (did you know buttons down shirts are all the rage for the summer?) and even managed some Sullys ice cream (that was a tough one 😉). I’m blessed with lots of help and prayers. Thank you so much to everyone! The kids are done with school on Friday, so next week will bring all new challenges…but I know our village will help us get through and I look forward to the day we can pay it back!

Now if you’ll excuse me, I’m going to get back to kicking melanomas butt! ❤️

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4:30AM Wakeup call

June 18, 2018

Usually if I’m up at this hour it’s because someone needs me.  They’re sick or they had a bad dream.  Once upon a time it was for diaper changes and feedings.  Then there were those fun times when I had a flight to catch at some ridiculous hour that led to friends, family & fun.

Today’s call was different for sure.  As usual I was awake before the alarm (doesn’t that always happen when all you really want is that little extra sleep?).  I thought I would feel all the nerves…and there are definitely some.  But mostly, I just feel ready.  Ready to move on. Ready to get these terrorizing cells out of my body. Ready to be on the other side of this surgery.

I’ve got the best team of doctors…but an even more amazing team of support in all of you.  Though I would prefer not to have a reason to keep this blog, or hear all of the AMAZING messages from each of you, in a way I’m grateful for having the chance to express how much I appreciate each & every one of the people in my life.  This surgery may be small in the grand scheme of life and certainly what other’s have gone through before me, but it has opened my eyes to just how strong a circle of love and prayer can be.  So thank you…and please keep up the good work with those prayers.

We leave for MGH in T-4 minutes.  Andrew & my mom are my chauffeurs for the event and my personal team of tigers making sure I get nothing but the best.  So today, don’t worry about me, but if you would take some time this morning to imagine me healthy, whole and free of this disease – the visualization from all of you would be greatly appreciated.

My arrival time is 6am. We think I’ll be in surgery around 8, but we are on the doctors schedule so only time will tell. My tigers will post to Facebook and let you know when I go in. The procedure can take 1-2 hours, but for me it will be the blink of an eye…And I’m okay with that. I’ve had my Gatorade, I’m wearing my ‘Ohana means family’ stitch shirt, I have Holy water and a white cell -germ eating stuffed animal. I’m wrapped in my prayer shawl and I’m hoarding all of your thoughts and prayers!

The next time I’m here, I’ll be a teeny bit lighter in body…and a GREAT deal lighter in disease.  I’ll also be so full of love and prepared for a full recovery!

Lots of love to you all…now if you’ll excuse me, I’m off to kick melanomas butt!