Bob Long & Doug's little sister...

I was blessed with the opportunity to celebrate the wedding of Rob Long (he was always Bob Long to me, though) and Sarah Allen.  The Longs lived in the house kitty-corner to us and I probably spent a good 1/4 of my life in Rochester at their house.  I babysat for Bob and Jon and Barb & Rick were like second parents to me (even though Rick never made good on his promise to take me to Letchworth for a scavenger hunt!) and now Bob is all grown up!  Sarah's older brother, Doug, was in my classes from 5th grade - 12th grade -- such a small world!

The wedding was wonderful -- a beautful sunny day, an outdoor wedding in a pretty garden, a fun-filled reception (with great food) and time to spend with our old neighbors... and, of course, a party is not complete until Jesse hits the dance floor!

Congratulations to Rob & Sarah & Ryan & Baby Long -- here's to years of love and laughter!

PS -- There's an ant on your...

flags

On Friday, we got up and spent the morning at the Corning Museum of Glass.  We had heard really good reviews from Lois and Aunt Joan... and while I suspect I've been there at least once as a child, I couldn't really remember it... so we decided to check it out.  It was definitely worth the trip -- of course, Mike enjoyed the "science room" best! 

We then headed north, through Watkins Glen, to pick up my brother (he was camping at Sampson State Park).  To pass the time on the road, we started playing a new game with the camera I gave Mike for an early birthday present... the object is to take pictures of American Flags in interesting places... here's just a few taken during our drive from Corning to Rochester via 96A/5 & 20/390 (I need to figure out how to crop some of these, but my photo editor is not behaving... you may need to click on the pictures to zoom in).

Please feel free to send along any good photo ops you come across during your own travels -- we'll be starting a collection!

taking the scenic route

A couple of back-posts from our trip to Rochester last week...

Mike and I headed up to upstate NY on Thursday (7/29) for the start of our week long vacation (from work, from NJ, from chemo!)  We left Otis with Charlene, Jeremy and Regan (Regan thought he was a gift as she told her mom that "This is from my Linda!"  They'll be joining us on Sunday at the house we've rented near Sodus Bay.  Of course, after dropping Otis off, I realized that I had forgotten my coumadin, so we had to turn around and drive the 30 minutes back home before heading out (thank goodness Mike loves me!)

Our road trip took us through Clarks Summit, PA -- a town that holds fond memories from the summer I spent working as an intern at P&G in Mehoopany (I was a "diaper engineer").  Most of the full-timers lived in Clarks Summit and commuted the 30 minutes out to Mehoopany and since I spent most weekends hanging with Joe, Josh & Vin, Clarks Summit was like a second home to me.  The town has grown quite a bit since then (1998).  We stopped for lunch at Waffle House and then decided to take the scenic route from there up to Corning, NY (our destination on day 1). 

We headed west on Route 6, a beautiful road that winds along the Susquehanna River.  We passed through Tunkahannock (where I actually lived that summer) and then up across the NY-PA border.  We made it to Corning around 7pm.  It took us several tries to find a hotel room --

• the first hotel was booked for a wedding
• the second was too sketchy to consider
• the third was booked by the "11th Annual Lap of PA" , sponsored by the Corvette Club of Western PA (ummm... don't they know that Corning is in NY... not PA???)
• the fourth had only one room left... a smoking room
• the fifth jacked their prices when they realized everything in town was sold out
• finally... we settled in at the Corning Inn... a bit sketchy, but at least it was a room!

Jen and Ella

Oops!  I suppose I should put something in my post before I publish it, eh? 

Well, just a quick post about a wonderful visit with my friend Jen & her daughter Ella.  Jen is a special friend to me and now that they live in CA, I don't see her nearly enough! 

Ella really loved Otis.... and vice versa!

Haircuts & Lollipops

My hair has been falling out for the past week... on Wednesday, it started really coming out -- I can't brush it,  I can't touch it... it's everywhere (except for on my head)!  To minimize the mess and take some control back, many women will buzz their hair off after it starts coming out.  I did it last time (I'll have to dig up those pictures and post them up here too...) the day it started to fall out... this time I waited nearly a week -- first I waited because I didn't want a "bald birthday"... then I waited so that Char and Regan could be there with us.  It's a good thing I did wait -- Regan remembered that you get lollipops after you get your haircut and was nice enough to bring enough lollipops for all of us!

big arm -- update

After the ultrasound, they handed me the scans and told me that Dr Cairoli wanted to see me in his office.  Obviously, there was something wrong... otherwise, they would have just sent me home, right?

I drove over to the office and met with Dr Cairoli.  I have a blood clot, which is a somewhat common complication that occurs with a port.  Because they've surgically implanted a port in my chest (for chemotherapy infusions), my body is not quite sure what to do and a clot has formed near the port.  Fortunately, I noticed the symptoms right away (swelling/soarness/tightness in my right arm) and called the doctor.  They were able to start me on treatment immediately to try to break up the clot.

1. I'll start with Lovenox injections, once daily for 5-6 days.  This will quickly thin my blood and, hopefully, break up the clot
2. I'll begin taking Coumadin as well.  This is a daily pill and I will take this for as long as I have the port.

Both of these drugs work to thin your blood and prevent clots.  Of course, this means I have to be very careful about cuts and bruises... but, hopefully, it will allow me to keep my port in.  I would hate to have to go back to weekly IV's in my arm!

big arm

I need to catch up on my blogging this weekend -- would love to share pictures and stories about last weekend's birthday bonanza, this week's (uneventful) round 4 of the Abraxane, and my trip to Yankee Stadium last night... but wanted to post a quick update about my BIG ARM.

For the past day or two, I've been feeling like my right arm is sore and numb and swollen.  I thought maybe I just slept on it funny, but then last night... I forced myself to sleep on my back and this morning, it's still funny.  I've got pain in my armpit and it feels like a rope under the skin there. 

Worried that it might be a complication with my port, I called Dr Cairoli's office.  They are so great.  There's this magic voice mail box for the nurses and they always call back so promptly and are so friendly. 

Rosemary called me back and her initial concern is that I may have a blood clot.  The port is essentially a foreign body and we don't always like it when doctor's try to implant foreign things in our bodies... go figure!  I have an appointment for an ultrasound today at 3pm, so fingers crossed that it is nothing/something minor they can address.  It would really really stink if I have a serious problem with my port...

3-4

Mike spent weeks planning a birthday party that would go down in the record books as the best birthday party ever... all to mark my milestone 34th birthday. 

Thanks to everyone who came out to celebrate with us... especially those who travelled in just for the occasion:  Sarah (CA), Amy/Steve/Keleigh/Zach (OH), Chris/Gregg/Josh/Jon (OH), Tate/Susie/Tegan (RI), Pete/Jude (CT), Matt/Nicole/Matthew/Tommy (CT), John (DC), and Deb/Bill/Alyssa/Hannah (NY).

We had a great day, full of friends, family, games, laughter, hugs and... a bounce house (thanks Rosners!) 

More photos....

5 and 1

Chemo was moved from Wed to Tuesday this week so that Dr Cairoli can make it to a breast cancer conference in Boston.  I was a bit nervous about going in in the afternoon (3:15pm appointment -- was afraid they'd be crazy busy) but things went really smoothly.  We were in and out in just about 2 hours, which is an official record.

We brought in a calendar to try to plan chemo around our trip to Rochester and were really pleased with the plan Dr C came up with.  My counts have been really good, so instead of 3 weeks on - 1 week off, I am going to do 5 weeks on - 1 week off (for this first cycle only), giving me the entire week off to stay up in Rochester between Bob's wedding and my 16th high school reunion.  We've rented a house on Sodus Bay for the week with Charlene, Jeremy and Regan (Otis is going too) so this gives us a bit more time to stay upstate! 

Today hit me pretty hard.  I moved from the bed to the couch at 9:30 --- next time I opened my eyes it was noon!  Somehow I am still tired... but thankful to have the day to recover.  Back to work tomorrow and Friday (probably partial days but planning to actually go into the office).  I enjoy getting into the office to see everyone -- kind of funny to look forward to going to work!

Abraxane #2

2nd round down. 

My port was a bit difficult to access, given some of the swelling I still have.  That's unfortunate because I will say -- it is not pleasant to have them stick a one inch needle into your chest -- let alone have to do it twice!  I had to send Mike out into the hall.  I was afraid he'd see my face and get queasy. 

After they start the port, they draw some blood and send it to the lab to check my counts.  Meanwhile, I meet with the doctor.  Today's meeting was uneventful.  A quick discussion about how last week went and then off to the chemo room. 

While Abraxane is only a 30 minute infusion + 15 minute saline flush, it winds up taking a bit longer from start to finish.  They have to wait for my labs to come back and then they start mixing the Abraxane.  Apparently, it takes it a while to dissolve, so I was in the chemo room for almost an hour on only a saline drip.  I suppose the extra fluids can't hurt.  We were in the big room today -- about 8-10 chairs (one woman around 40 years old, two women around 50 + three men 60+).   Rachel Ray was on the two tvs, talking about s-e-x... it was probably the most uncomfortable chemo experience ever.  For serious.

I saw a woman that I met last week named Janelle.  She is going through treatment for primary breast cancer and is ~40 years old.  She's doing pretty much the same treatment I had 5 years ago.  She cried last week when we met.  When she told me she had just been diagnosed and was halfway through her treatment, I wasn't sure whether to lie or tell her the truth (which could be depressing for someone who is just starting her own fight).  Being a terrible liar, I opted for the truth.  I'm still not sure that was the right decision.   I guess we all know the reality that, despite our best efforts to poison the beast, breast cancer can recur 2 years out, 5 years out... 10 years out... we don't like to think about that -- how could we deal with this a second time???  But maybe it's good to see that if that should happen to us, we'll do the same thing we did the first time:  pick up our chin, dig in our heels, surround ourselves with those we love and fight like hell... just like we did the first time.

Flimsy veins and thick chest wall

I had a quick follow up with Dr Escalona --- both incisions are healing well.  It turns out the upper incision (right on my collarbone) was the first that he made.  Typically, they insert the catheter in one of the large veins in your neck.  Unfortunately, mine was "too flimsy".  Not sure what that really means, but not super surprising given the veins in my arm!   So, turns out this incision is a "dud"... doesn't serve any real purpose.  I'll have to come up with a good story for how I got that scar I suppose.

The second incision is about 2 inches lower on my chest, right above my armpit.  This is where the port was implanted.  He had to insert the catheter into a vein in my chest, which is why that area has been so sore and bruised.  The port is just under the skin, though the doctor says it's deeper than most... given my "thick chest wall". 

I received the all clear to resume normal activities.  When I asked if that included bowling or waterskiing, he said he'd give those a few more weeks.  Not that I really bowl or waterski that often -- can't even remember the last time I bowled (maybe 4-5 years ago when Mike and I went bowling with Charlene and Jeremy?)  -- and the last time I waterskiid was a few years ago at Uncle Bill & Aunt Deb's (don't even think about a banana!) --  but those were the most strenuous activities I could think of and I wanted to test and see just how "normal" I could be.  Sounds like with a few more weeks I can do just about anything I like though!

With lots of kisses on my boo boo from Regan, it's almost "all better".