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Archive for October, 2012

I’m actually not sure what ‘the home stretch’ literally means, but I feel like with 21 weeks of chemo down, and only three weeks left, that it should constitute the home stretch for me. Somehow four weeks to go seemed like forever, whereas three weeks seems like nothing! Well, maybe not nothing when it’s still cumulative, but doable. And a real end in sight.

Today was not bad at all. It went by really fast and was my first day without steroids or Benadryl before the pepcid and taxol. And no big reaction. I think all of the rest since Friday, including working from home in my pjs on Monday, really helped. I feel so much better. Sure there are aches and pains, but now that I know basically that it’s the taxol, and I’m starting to pace myself more, I think I can handle it. I know I can.

 

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Why does it constantly surprise me that I am fighting cancer? Why does it take getting sick to slow me down? Why do I insist on trying to be normal and keep up with everyone else and pretend nothing is wrong? Why can’t I remember that I am bald? Yes, those are all rhetorical questions – I don’t expect anyone to answer them. I just get mad at myself and mad at the whole situation. I am mad.

When I returned to work Thursday following the port, I was asked “does it hurt?” Yes, I replied, but it’s not much different from every day – something always hurts. I’m used to something constantly hurting, whether it’s my arm, my boobs, my fingernails, my feet, my mouth, whatever – at least they usually take turns and don’t all hurt at once. I ignore it and plow through.

But yesterday I started feeling… different. It was really strange how it washed over me and suddenly I was concerned. I’ve been congested and blowing my slightly bloody nose day and night that I’ve gotten used to the constant sight of blood (sorry for those that this grosses out – but it’s reality). When I mentioned it a couple of weeks ago, my doctor told me not to worry about it, but I wondered if it was at all connected to how I am now feeling. Each time I take a deep breath, my chest, back and back of my neck get really tight, and my head feels… full, I guess, too. And if I bend down, my head feels like it might explode. Add that to how tired I am and how just walking to my car makes me winded, I figured something could be wrong.

So I spent much of today back at Dana-Farber. Blood clot? Pneumonia? An EKG, CT Scan and a bunch of blood work later and the prognosis is basically that I have a viral infection and that the build up of the taxol is catching up to me, and that I need to slow down. Basically, a reality slap of I’m not invincible. That I am being poisoned each week and it is a cumulative drug and it’s going to keep getting worse for four more weeks and I better slow down or I’ll only make it worse. I better wake up and realize that I can’t just ignore the fact that I am fighting cancer.

So I canceled all my weekend plans. Rest and Robituson. Those are the doctor’s orders. And even though I’m mad at the whole situation (being sick, cancer in general, and missing dinner with a friend tonight, my eldest Goddaughter’s birthday party tomorrow, book club Sat night, etc. ), I will follow them. Both because I feel horrible and don’t want to move from my couch anyway, but also because I am not ready to sacrifice work or the CMAs and I want to be ready for both next week. So I will sleep the weekend away and hopefully build up enough energy to pick the pace back up again on Monday…

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Chemo week eight wasn’t fun, but the infusion was the least of it. Honestly, I probably shouldn’t be posting right now because I am on painkillers and they say I’m not supposed to ‘drive, operate heavy machinery or make important decisions.’ I think that basically means you’re not in your right mind – and I do know that is true, and figure you probably shouldn’t write things for all the world to see when you’re like that, either. Oh well – I am anyway because I feel guilty not – so many people have been checking in on me because they haven’t seen a post yet and I feel bad having anyone worrying about me… instead you get to read my rambling! That said, I’m going to keep this brief, so I don’t say anything I’ll regret in the morning.

Tuesday (was it really only yesterday?) started at 5:30 in the morning, rousing mom and Nick so we could get to Brigham and Women’s Hospital and I could be the first in for the port. Long story short, I was dozing on the operating room table when I was woken and asked if it was ok for them to put the port in my arm rather than my chest as they were concerned about the placement of the tissue expanders. Since the last thing I want is one of those popped (I have a friend with implants and one has deflated – not fun), I said of course. Whatever they deemed best.

The next time I woke up we were done and I was in recovery with mom and Tina. I don’t remember much except that all was fine with the world (yes, I was heavily medicated), I got dressed and they wheeled me on over to Dana-Farber for the infusion. They used the port for both taking blood to do my labs and the infusion, so it was already paying off – no routing around my poor veins any more. The redness around the port was definitely growing, though, and the nurse drew a circle on the clear bandage, saying if the red spread outside the circle to come back.

Home we went and as the evening went on and the meds wore off, the pain increased… and this morning the red was well beyond the circle and felt much worse than the ‘slight discomfort and tender’ that the discharge papers said I’d feel – I couldn’t even put my arm down at my side! I called and it was back to the hospital for us…

Luckily it isn’t the type of red they’re concerned with: the doctor said, in fact, that most of my upper arm will turn red and then black and blue (note to self: may want a dress with sleeves for CMAs), and that it is only ‘infection red’ (didn’t realize it was its own special shade) and warm to the touch that they worry about. He also said it should be better by next Tuesday for the next infusion, and it’s not so bad for most because they can take Tylenol or ibuprofen. I can’t because of my liver, so he said to stick with the painkiller I was prescribed – but I can’t take that and go to work. So I get the choice of comfort at home or pain at work – great.

So for the rest of today I chose rest, and tomorrow it will be back to work, and I’ll grin and bear it. I hate to say it, but I am getting so used to hurting that I don’t really care. I don’t think there’s been a day since the surgery in April that something on my body hasn’t hurt, and the aches increase every day. I am holding out hope that it all really does subside shortly after the last treatment.

Overall, though, I am just thankful that it hasn’t been worse. That I can still get up and out of bed every day. That I can still work. That for the most part – other than the aches and pains and cringing every time I look in the mirror and see my mostly bald head  and the weight I’ve gained – I’ve been able to maintain relative normalcy in my life throughout all this. And that I will live and, as so many keep reminding me, someday this will just be a chapter in my life rather than the main storyline…

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Written on Oct. 21, 2012

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This was without doubt the pinkest weekend of my life. It was the peak of the pink month, at least for me. First it was the Komen MA Race for the Cure, and then the Nashua Harley Davidson Making Strides Against Breast Cancer Fashion Show and Live Auction benefit. It was an incredible show of support at both events. Every time I attend an event with the breast cancer community I am amazed at the positive, inviting, friendly vibe. And it was the same at the Harley event, too, where we felt as welcome as if we were one of the family, even though Vanessa, Kevin and I had never been there before. Thank you to Robin Dixon, who organized the incredible fundraiser – we can’t wait to go again next year, and plan to bring more family and friends! The walk was great, too. I was joined by my good friend Alicia, who conveniently lives just down the road from the park where the walk was held, and Linda, who just finished radiation – so it was a celebration of her completing treatment! While I hate being constantly reminded that I have breast cancer, I am very thankful for the heightened awareness and support, which is leading to more research and eventually, hopefully, a cure for all types.

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Do you remember my August 28th entry, Friends are the Good Stuff? Well, that awesome letter Tina wrote has won us tickets to the 46th Annual Country Music Awards in Nashville on November 1! (Luckily, I can travel with the port, now have the compression sleeve for traveling, and it fits in between chemo sessions. And we are going to just pray that the side effects don’t worsen too much, too fast, in the next few weeks….) As Tina put it, she’s taking her job of distracting me from all this cancer stuff to the next level! Here’s how she did it…

While Tina was visiting family in Oregon, she saw this contest:

NARM and RIAA — the creators of Give The Gift Of Music — have teamed up with CMA on a mission to find out how this year’s CMA Award nominees have inspired music lovers across the country. Each of these talented performers have been given a wonderful gift — the ability to put feelings and emotions into words to inspire others. They share these gifts willingly and now it is your turn to let these artists know how they have touched your lives.

Honestly, do you think there could be a more perfect contest for the letter Tina wrote? The entry was due at 11:59 p.m. the day she arrived home from Oregon. As soon as the girls were settled, she went to work and spent all night working on the submission, which she finally finished moments before the deadline. She didn’t say anything to me as she didn’t want to get my hopes up – who ever wins these things anyway?

Well, this time we know! Yesterday afternoon, Tina received the call: the judges unanimously selected her entry!!! Tina and I will be going to the CMA Awards on Nov. 1 – Yee haw!!!! I was in shock when I heard – think I still am. But I am incredibly thankful. I am always telling Tina she gave me the most incredible gift in the world by having my three beautiful Goddaughters, but she never thinks it’s enough. I do, but I agree this is a pretty awesome gift, too!!!

So what exactly did she spend all those hours on? An abbreviated version of our story, the part that ties to country music, and specifically Kenny and Tim:

Without hesitation, I would like to share a story about The Brothers Of The Sun Tour with artists Kenny Chesney and Tim McGraw.  As Kenny Chesney is nominated for Entertainer of the Year, Music Video of the year and both Kenny and Tim are nominated for Musical Event of the Year, I feel that this is a good place to share the story about my best friend, Amy, and me. 
We are huge country music fans and have attended many concerts, however, none more so than that of Kenny Chesney and Tim McGraw.  We have made it to every Kenny Chesney concert at Gillette Stadium, Foxboro, MA, (the full five in a row) and to all of Tim McGraw’s concerts held at what is now called the Comcast Center in Mansfield, MA. This year, when it was announced that the artists would be touring together, we knew that this would be an event to remember and no matter what, we would be in that audience!  We had the tickets bought and were looking forward to August. 
Not long after the tickets were purchased, Amy was diagnosed with breast cancer and has been fighting it ever since.  Luckily, through a self-check she caught it fairly early and it is not the type of cancer where she would be facing death.  However, hearing the word ‘cancer’ feels like death and in my life it has meant death. I have lost an uncle as well as a close family friend to cancer.   Needless to say, I was completely overwhelmed by her diagnosis.  Amy actually seemed to take the news better than I did and she even sent me a card two weeks after her diagnosis that sits on my desk and reads “Faith means not needing to see where you’re going to know you’ll get there safely.  You’re doing a great job at a very hard time in our lives. Even though you can’t see what lies ahead, please believe that we are safe and trust that everything WILL work out.” It struck me funny that here I am trying to be the strong one for her and here she is seeing my worry and found it important to encourage me and my strength. Simply put, she is an incredible and amazing woman.
We have been best friends, actually more like sisters, for twenty years.  We have raised each other up during our lows and have celebrated together all of our highs.  Although, Amy has a wonderful and supportive family, there have been many moments through her cancer journey that I have felt at a complete loss… What can I do to help? How can I be most supportive right now? Amy never complains, always puts a positive spin on everything and has used her cancer experience to share her journey with others candidly and honestly through her blog athttp://www.amysamerica.com/.  I had difficulty defining my own role in her journey at first, but concluded that it has seemed to be one of entertainment, distraction and just by being there for her.  I was able to be at the hospital during her double mastectomy and have been able to attend all but one of her chemo treatments thus far.
Although, the biggest distraction between March and August was the concert we were waiting for so eagerly. Amy had informed me that no matter how badly she was feeling, even if I had to carry her, she was going to make it to our concert of the year!  I bought her Kenny Chesney’s new album as soon as it came out and was able to give it to her during her wig fitting party. Music has always been a really big deal for us as it has helped us get through so many difficult times and this year is no different.  I think Kenny Chesney’s “Reality” has been our song of the year as we keep acknowledging the reality but constantly want to escape from it. So, I really latched on to the music and concert distraction.  In fact, I wrote two letters to her using the song titles of Kenny Chesney and Tim McGraw to keep the distraction going:
Letter #1
MY OLD FRIEND,
                HEY NOW, as I sit here looking at a BLANK SHEET OF PAPER, I couldn’t resist the opportunity to talk about ME AND YOU. This concert is seriously happening NOT A MOMENT TO SOON!  Unfortunately, MY LITTLE GIRLs are not nearly as excited about this concert, since they’re not going, but I just can’t wait for you to COME OVER!!!
               
The past few months I feel like I’ve been LIVING IN FAST FORWARD and have been feeling kinda ANGRY ALL THE TIME.  Last week, I was actually thinking, well, THERE GOES MY LIFE.  The silver-lining (as usual) is heading SOMEWHERE WITH YOU.  I love SUMMERTIME and our concerts.  Life seems to, once again, be THE ROAD AND THE RADIO and it appears that every FLIP FLOP SUMMER, YOU SAVE ME.
I know the past five months GOT A LITTLE CRAZY (to say the least) and has seriously been a WILD RIDE. I feel confidant telling you that I truly feel like I know HOW FOREVER FEELS, but yet, TIME FLIES. Your breast cancer diagnosis really did SCARE ME and I hope to NEVER FEEL THAT WAY AGAIN.  I am glad that you GIVE IT TO ME STRAIT as I WOULDN’T WANT IT ANY OTHER WAY, but everyone knows that you’re ONLY HUMAN and that you are clearly doing WHATEVER IT TAKES to tell that horrid cancer that you WILL NOT FALL DOWN.  I have my SUSPICIONS, although, I can’t imagine how difficult the moments are when you’re alone and you allow yourself to be honest with you.  I know there’s so much you don’t allow others to see.  To be honest, there have been moments where I know I DON’T BLINK as I have felt helpless in helping you… but…then you speak, and I am completely reassured that you are ALWAYS GONNA BE YOU, cancer or no cancer, YOU JUST GET BETTER ALL THE TIME!  I can’t wait for the end of this whole run of doctors and treatments to be over for you… and to celebrate your attitude, your being THE ONE to beat cancer (which is NO SMALL MIRACLE) and to shout out at the top of our lungs TOUCHDOWN JESUS!!!!
               
I’m thankful you have so much support and that you know that you’re not IN THIS BOAT ALONE. ALL I NEED TO KNOW is you believe me when I say that I WILL STAND by you no matter what and would do anything TO GET TO YOU if you needed me, after all, THAT’S WHY I’M HERE!  I know all of this will be much BETTER AS A MEMORY and that there’s more to come DOWN THE ROAD and I know that you will deal with that with the same BE AS YOU ARE outlook but JUST NOT TODAY…
               
…TODAY, we once again get to SET THIS CIRCUS DOWN, be STILL, feel a little FREEDOM from all the I’M WORKIN’, SHIFTWORK.  LET THE LAST DOLLAR FLY AWAY and break free from REALITY… I NEED YOU to LET IT GO…ALL of it, and truly break free from the past few months. So, instead of sitting WHERE THE GREEN GRASS GROWS, we WILL STAND, SOMEWHERE IN THE SUN, in front of an OLD BLUE CHAIR with an awesome view of your ISLAND BOY (who I’m sure you begged to PLEASE COME TO BOSTON), Kenny, as he sings about GUITARS AND TIKI BARS with my INDIAN OUTLAW and REAL GOOD MAN, Tim, FOR A LITTLE WHILE. Ohhh, he definitely brings out THE COWBOY IN ME or SOMETHING LIKE THAT but that’s just BETWEEN THE RIVER AND ME! 😉
               
You are one of the world’s most BEAUTIUL PEOPLE and are certainly the SPIRIT OF THE STORM.  Your FRENCH KISSIN’ LIFE and LIVE A LITTLE, always SMILING, attitude is contagious.   You’re optimism makes me believe that no matter what life throws at us we can ask, DO YOU WANT FRIES WITH THAT?      
THIS IS OUR MOMENT with the Brothers Of The Sun!  So, tonight I want you to know that WHEN THE SUN GOES DOWN, WHEN THE STARS GO BLUE and the MAGIC of the concert begins we will LIVE THOSE SONGS in BOSTON while pretending we’re going COASTAL, we’ll FEEL LIKE A ROCK STAR while singing, I LIKE IT, I LOVE IT, in our most SOUTHERN VOICES and I’m absolutely certain that we’ll SING ‘EM GOOD MY FRIEND.  IT DOESN’T GET ANY COUNTRIER THAN THIS and I am looking forward JUST TO SEE YOU SMILE. This is definitely THE GOOD STUFF and I can honestly say for a moment like this, with MY BEST FRIEND, I NEVER WANTED NOTHIN’ MORE!!!!!!!!
So, are we gonna have a good time?  Well, TRUCK YEAH!!!!
I love you BFF, Tina
Letter #2:
Dear fellow member of No Shoes Nation,
WELCOME TO THE CLUB which, as you know, is a very special honor as part of our WELCOME TO THE FISHBOWL!  IF YOU’RE READING THIS than you are well aware that we went OUT LAST NIGHT!
               
I’m happy to report that I’M ALIVE and well and LIFE IS GOOD today, but I am already looking forward to SLEEP TONIGHT. After finding A PLACE IN THE SUN, I was happy to let the music just TAKE ME AWAY.  It was nice to feel like we were ON THE COAST OF SOMEWHERE BEAUTIFUL and if you’re anything LIKE ME, a part of you still feels like you AIN’T BACK YET.
               
I couldn’t have imagined In MY WILDEST DREAMS seeing Tim and Kenny perform together!  I was as giddy and excited as if I were SEVENTEEN again but it was so much better than any of the DREAMS!!  I was ecstatic to see Faith come on stage to sing with Tim, AIN’T THAT LOVE!?  There was so much fantastic music all in one place that even I felt like a BIG STAR.
               
As with most concerts, I still enjoyed the people watching. Most looked they started on their KEG IN THE CLOSET or their HEMINGWAY’S WHISKEY before they arrived.  Hopefully, they put their KEY’S IN THE CONCH SHELL on the way in and had NOWHERE TO GO, NOWHERE TO BE after the concert.  I’m glad we’re GOOD GIRLS and don’t need to worry about things like that even though I’VE GOT FRIENDS THAT DO.  Although, I think if you ended up in a bad situation (like several of the individuals seated around us) you would quickly FIND OUT WHO YOUR FRIENDS ARE.
               
When I THINK ABOUT LEAVING, I get a little choked up and feel like TEARS IN THE RAIN but AIN’T THAT THE WAY IT ALWAYS ENDS!? IT’S NEVER EASY TO SAY GOODBYE. I’m sure this concert will be the focus of my thoughts for at least the next SEVEN DAYS, maybe even 40 DAYS AND 40 NIGHTS, but I suspect that I’ll likely remember it for at least MY NEXT THIRTY YEARS. 
               
When I CLOSE MY EYES, I GO BACK and I can still see Kenny, that LUCKY OLD SUN, singing SHE’S FROM BOSTON and Tim singing, FELT GOOD ON MY LIPS, but no matter what part of the concert comes to mind, I smile at the thought, but THAT’S JUST ME.
               
I know ONE OF THESE DAYS, when we’re no longer this YOUNG and we’re DOWN ON THE FARM, we’ll eagerly take a walk down MEMORY LANE and I’ll be able to say, “I REMEMBER, BACK WHEN we went to see The Brothers Of The Sun Tour just like I remember PARIS/TENNESSEE and EVERYWHERE we’ve been together.”  Luckily, memory is something YOU CAN TAKE WITH YOU, although, we’ll probably remember A LOT OF THINGS DIFFERENT.  However, when I start rambling about BACK WHERE I COME FROM I can’t promise that those memories won’t sound more like REFRIED DREAMS. 😉
               
I’m glad we got A CHANCE to catch up even if we did spend BETWEEN MIDNIGHT AND DAYLIGHT sitting in the parking lot.  COMIN’HOME, the concert was all I could think about, so I was really glad that the radio station played Tim and Kenny music long enough to have them SING ME HOME.
               
Well, time is TICKIN’ AWAY and I am HOME so I should probably get busy and not WATCH THE WIND BLOW BY any longer.  I have to figure out WHAT I NEED TO DO next and get OUTTA HERE, but as usual, I wanted you to know that IT’S BEEN A BUSINESS DOING PLEASURE WITH YOU! Perhaps we should get ONE STEP UP on next years’ concert or MAYBE WE JUST SLEEP ON IT for now!?!
I hope you have a great week and thanks for letting me be your SHOTGUN RIDER, I always appreciate THE RIDE!
Xoxo, Tina
Since the concert I have continued keeping Amy smiling and distracted, but I would love to give her something even bigger and quite frankly, something for her to be excited about. I wish I could do so much more for her as a thank you for all the ways she continues, even thru cancer, to think about me and making sure that my girls and I are okay. I’m not one to enter contests, but when I saw the CMA Facebook post about this, I knew this was one contest I needed to enter, if for no other reason than the possibility of giving something back to Amy, giving her something else to look forward to and to give her a much greater “Thank you!” for being the amazing person that she is not just to me, but to everyone that has crossed her path.
Amy and I have talked repeatedly about one day making it to the actual CMA’s in person and not just watch them on television, but that has always seemed out of reach. This contest is an excellent opportunity to make our dream a possible REALITY and submit an entry to attend an event that Amy and I have only spoken of and dreamt about… after all, something like this, JUST DON’T HAPPEN TWICE!
I greatly appreciate your time and consideration to my submission.
Thank you, 
Tina Robinson

Unbelievable, huh? This has all led to my epiphany that Tina needs to start writing for a living – one of the many things we need to talk about. But not now, now we need to book our flights, hotel and figure out what the heck we’re going to wear! Thank you, thank you, thank you, Tina: THIS IS OUR MOMENT! BE AS YOU ARE, LET IT GO, forget REALITY and let’s go see my ISLAND BOY and your INDIAN OUTLAW! It will be MAGIC and we will FEEL LIKE A ROCK STAR! Thank you for always keeping me SMILING – with all your love and support, I know I’m NOT IN THIS BOAT ALONE and I WILL NOT FALL DOWN! Thank you for making one of MY WILDEST DREAMS come true! Love you!!!!

‘Like’ The Country Music Association on Facebook here and Give the Gift of Music here – maybe you can win a similar contest!

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Today we set the record for the number of times it took to find a vein in my left arm to work: four. And that was four times of repeatedly trying and routing around in each of the locations. Not fun. The photo above shows the vein locator that was finally broken out, but didn’t end up being a ton of help, as the good vein that was found was below one that was already tried, so couldn’t be used. Ultimately what was decided, as this has become a growing problem, is that next week I will have a port put in that will be used for the five remaining infusions. The procedure to insert it under my skin will take place just before chemo so it will just make for a longer day. While it also has its pros and cons, at least we won’t have to go through the time and pain of searching for a vein to work any more – it’s just too bad that we didn’t do it in the beginning. But hindsight is always 50/50, right? (So if you’re just starting out and know, as I did, that your veins aren’t great, ask about a port!)

Overall, once we got the IV in, all was pretty good. I was able to dial back the steroids another dose, although that made the Benadryl hit me more so I dozed off a few times while talking to mom and Tina. As usual, they just laughed at me – most lovingly, of course!

Before the infusion, I had a great consultation with my oncologist. My blood work was all good, although it was interesting that there was a small blip in my liver that must’ve been the one time I took ibuprofen this week. I will continue to try to stay away from it… She answered all my questions about the increasing side effects I’m encountering and it was very reassuring. I can do this – only five more to go!!!

Because of my upcoming trip (check out my next entry for the exciting news), I was given a prescription for a compression sleeve. I visited the Friends Place boutique at Dana-Farber where Rosemary not only fitted me for the sleeve so that I can fly (helps prevent lymphedema), but also for a compression glove and found me a bra that instantly helped with some of the pains I’ve been having lately. Everyone there is so nice and helpful, I highly recommend it for everything from cancer-related gifts, jewelry and such, to the basics live compression items, wig fittings and other specialty services and products.

Then it was home to nap, and so far so good, since. I am glad to be counting down and to be done being a pincushion!

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Thank you, Tara, for running the Amica Half Marathon in Newport for Dana-Farber! While this was not how I thought this race would go when we signed up for it so many months ago, I was excited to lead your cheering squad and proud of you for running to help conquer cancer! Hopefully next year I’ll be able to run with you…

Don’t worry, all, you don’t need to run a race to make a difference: donate to Tara’s run here. Thank you!

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