February, Groundhog Day, Go Pats!!!

That fuzzy little rat looking thing named Phil in Pennsylvania told us we will see an early spring.  One can only hope, considering he has only been correct 39% of the time with his predictions I’m not sure how much stock I want to put into him.

Training is training.  It’s eh, not the best I have had so far.  Between my kids and myself, the colds, ear infections, strep throat, sinus infections and a bone fracture, it’s been a tricky few months.  Oh and my bad reaction to an anti-anxiety medicine.  That was fun for everyone!

After running Newport last October, I sat down with my mother and husband, my running support, and told them I really needed to make running a priority if I was going to run Boston again. As much as we have tried to make it work, it’s difficult.  I would love to be able to train and run Boston every year, knowing that isn’t realistic, I was hoping to run 10.  This year will be 9.  I don’t know if I will make it to 10.  My mother thinks I should give up marathon running altogether. She doesn’t feel it’s healthy for me.  A few days ago she asked if I could defer to next’s years race.  I can’t. You drop out and you lose all you have put into it.  I’m out a substantial race fee and I would still be responsible for the charity minimum to Dana Farber.  And to be honest, I don’t want to drop out.  I feel like a failure in so many facets of life, some beyond my control, but none the less the feelings are there and it’s just another thing in my life to feel bad about.  Alas, I’m here right now and I’m planning on toeing the line in April. Who even knows what next April will bring.

I have been on a clinical trail since last May.  There is so much involved in clinical trials from every angle.  From my end it means,  being in Dana a lot, more than I would on a standard regimen. The two medicines I am taking cause the same side effects so there are some issues that need to be resolved by putting off treatment until labs are back in a “normal healthy” range or dose reducing medicines to keep my body from going completely out of whack.  The two most tricky areas  for me have been platelet counts and liver enzymes. It took some time, but my team seems to have found a nice balance for me. I have been what I describe as  “under a microscope” every week.  There was a two month span when I was in Dana weekly for labs, a quick check, medicine and Dr.’s appointments. And it has been exhausting all on it’s own. Throw my young family into the mix and it’s a nearly impossible balancing act. I do the best I can, I really do.  I keep up with running as much as I can.  Long runs can be tough to schedule.  Ideally, I would love to be able do my long runs every Friday or Saturday morning as I have done for years, but that doesn’t always work.  So I fit them in when I can.  It’s been a cold start to the new year, so I have been indoors on a treadmill more than I would like.  I can’t run outside when it’s icy out.  Before cancer (BC) I never liked running on ice and I can’t now due to risk of fall and fracture.

I had some back and chest aches in recent months that have worried me.  My children and I have passed around a cold for nearly 6 weeks.  Colds and seasonal illnesses are tough enough when you don’t have a compromised immune system, but  there can be more complications when you do.  I was coughing so hard at one point that I believe it’s what  caused a fracture in my original bone met, hence the pain I have been in. But let me back up a bit….

Last November my family and I were gifted a trip to Myrtle Beach by an incredible Foundation, The Karen Wellington Foundation,  www.karenwellingtonfoundation.org, Everyone was so nice and helpful and just wanted us to get away from the stress of cancer.  They were the first foundation to ever tell me I was qualified for anything.  I have signed up through my Dana Farber social worker for help with anything.  I never qualified for anything.  Most places never reached out or offered anything, not even emotional support.  The only contact I had from one of them was to ask me for a donation.  As you might imagine it can be frustrating and isolating.  The Karen Wellington Foundation did just the opposite.  They were the first place that made my family and I feel like we mattered.  It’s bad enough living with cancer forever, but hearing over and over again, “you don’t qualify” or “that’s not for people like you” is painful.  So, Thank you KWF for all you have done for my family.

Our trip started off very nicely.  It was the girls’ first time flying and they were both ACES!  I think I was more of a wreck than anyone.  Mike and I decided to drive down to Savannah, GA for a couple of days since we were so close.  It was supposed to be a fun couple of days seeing the beauty of the south. The day we drove down i started feeling really bad, achey and sick.  When we finally reached Savannah, I sent Mike and the girls off and jumped into bed.  I was in PAIN!  I had a quick bite, loaded up on Advil and attempted to go back to sleep.  Well, that night the Savannah DPW decided it was time to repave the road right outside our hotel room.  We tried to change rooms, but the hotel was completely booked up.  I was in so much pain the next day that I called my Oncologist and she looked up a hospital in the area and told me to go to the ER.  So, I did.  Unfortunately, we knew no one down there so the kids ended up there with us…all day!  I felt so bad for taking up a whole day when they should have been having fun to wait with me in the ER.  The two Dr.s who came in and took care of me couldn’t have been nicer. When I have to explain my medical history over the past 4 years, I find Dr’s look at me, read a report, look at me again and can’t believe their eyes.  I just look at them and say, I know I’m a walking miracle, because I am.  Mike pulled up my recent scan results and I went over everything with them.  My Oncologist had me request a few specific blood tests and told me they would most likely be looking for a blood clot based on the amount of traveling I had done in the past 4 days.  Because I had super low platelets at the time, it was highly unlikely, but I am an anomaly so I didn’t rule it out.  After 6 hours and a slew of tests they did give me some pain meds, told me I was okay to leave and sent me on my way.  I was thankful for their help.  I can say University Hospital in Savannah, GA is a great hospital to go to if you should need their services.  The rest of our trip went smoothly and we enjoyed it.  I only wished we had more time.  I want to go back soon!

Six days later I was in the Brigham for my routine scans.  Everything was stable and my pain was moving and subsiding somewhat.  I was getting overanxious over nothing and getting shaky and agitated easily.  I thought it was the coffee I drink, but I have been drinking coffee for years and never had a reaction like this.  It took my mother to say I think it’s the anti-anxiety medicine they gave you.  Well, I stopped taking it and the agitation and shaking stopped.  I was dumbfounded.  You hear about people having adverse reactions to medicines, but this was ridiculous and not anything I expected.  So we figured out that it wasn’t helping me at all!  It can cause muscle rigidity which I was also experiencing.

We made it through the holidays, welcomed my new niece, Josephine,  and enjoyed a beautiful family wedding on New Year’s Eve.  Mike and I were able to get away to Key West for a few days to celebrate out 10 year anniversary.  It was really nice to go back there, our little oasis.  When we got back, life rolled on.  Colds, Dr’s visits, you name it we dealt with it.  On a good note, I had scans this past week and everything is stable.  The not so good news was that I have a fracture in my manubrium and while I was getting e infusion Mike received a phone call to say he’d been laid off.  Talk about timing! I thought 2018 was one of the worst years of my life. I know it was a trying year for a lot of people.  I was really hoping to start 2019 with a better start.  Hopefully, the year will improve.  Because of the bone fracture I started a new medicine to help strengthen my bones, the big downside, I was told I would have flu-like symptoms for up to 3 days.  Well, as expected, I was completely down for 2 days.  I couldn’t move the next day.  It was horrible and certainly not how anyone wants to feel ever! Supposedly, subsequent infusions don’t evoke the flu-like symptoms, but if they do, then I will not be on this medicine for long.  I’m hoping to feel better enough tomorrow to get my butt in gear and get out the door for some much needed milage.

I believe in research and finding cures and better treatments for cancer. There is not a cure all for cancer.  In Breast Cancer alone, there are different subtypes which are treated or “cured” vastly different.  Genetics plays a big role, bigger than people realize.  Most literature would have you believe that 10% of cancer is genetic.  More and more research shows just the opposite, genetics play a pivotal role in cancer and cancer management and care.   I am making my contribution where I can.  Who knows, the clinical trial I am on may be the answer for future cancer patients.  I believe basic research is one of the most important tools we have.  As long as I’m here, I will do what I can to keep researchers looking for answers.  They are my heros for that reason.

Please, if for no other reason than you have been touched  by cancer, help support Dana Farber and the Claudia Adams Barr fund.  I can’t possibly thank those who have supported me enough.  Your support, love and friendship mean more to me than anything.

If you want to help, find out more and donate, please visit http://danafarber.jimmyfund.org/goto/Katiec

Thank you for taking time to read my updates.

Katie

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Running

October… A busy time of year for most.  School has started, sports, after school clubs and events and it’s only going to get busier.  Family occasions, trips, babies, weddings, birthdays, Thanksgiving and Christmas.

I hit the ground running, quite literally, since 2018 began.  My children’s schedules and school events have become my life.  I try to run and workout as much as possible, but it is as if everything that has to be complete or fixed takes precedence over my life.  On top of that I deal with life as a cancer patient every day.  This disease has been co-existing in my body for over 3 years now.   It’s been one hell of a ride and not the fun kind. Since its been a while I’ll recap:

January – Training and Fundraising for Boston, Questionable scan.

February – Training and Fundraising, MRI confirming new cancer lesion. Start of new medicine regime.

March – Training and Fundraising – 4 Nor’Easters back to back to back to back

April – Boston Marathon, an incredibly gnarly day, but I enjoyed every bit.

May – Providence Marathon and Birthday run.  Routine scan – cancer lesion growing.  New Medicine regime – Clinical trail requiring me to be in Dana Farber weekly for the next 6-8 weeks.

PVD 2018_2

Early on in Providence

June – Training as much as I can – Weekly Dana visits one new regime.  First 2 months were very crazy – labs, labs and more labs.  I think I gave more blood in June than any other time of my life. 3 year cancerversary. Loss of a friend with Metastatic disease. School is out.  Felt completely wiped at the end of the month. Temps start swinging into the 90s and remain for 4 solid months.

July – First set of scans on new Clinical Trial – Stability.  Training as much as I can with my little buddy and trying to enjoy summer with my family. Fatigue is at an all time high as is my anxiety.  My cat Sammy in and out of Angell Animal Hospital for heart failure.

August – Family vacations, another set of scans and more treatment.  School starts for the Kiddos. Busy, busy time of year. Grace turns 3. Lost another friend with Metastatic disease.

September – School in full swing for both girls.  Running half marathons, more treatment.

 

October – Another Marathon, Another round of scans – semi stable.  Some changes, nothing to warrant a change yet, but might be one the horizon during the next set of scans.  Lizzy’s birthday. Which brings us to the hear and now…

I signed up to run Boston for Dana Farber again in April 2019.  I need this. My family and I have had an awfully crazy year with health issues (not even all mine) and I need the feel of normalcy again.  I was starting a new regimen when I last posted.  I have been on this Clinical trial for nearly 6 months.  Although, I can generally do most things it has knocked me back a bit.  There are more side effects with this combo, mainly fatigue.  There are some weeks when my blood counts are so low that I have to take a week off to rebound.  It stinks, but I’m dealing with it the best I can.  Some days are better than others.  My anxiety has been through the roof.  I never considered myself an anxious person until my life was thrown into a shredder.

I really struggled deciding whether I was going to run Boston next year.  It’s time away from my kids, I can’t always make team runs or events due to family obligations and others’ schedules, I wonder if I should give my supporters a break and, honestly, I didn’t know if I would be physically up to it.  I ran the Newport Marathon 3 weeks ago and it took a lot out of me.  I did not have the best training under my belt due to it being near 100 degrees every day this summer.  I also did not have much free time for proper training.  Getting out for an hour or two was one thing, but trying to grab 4-5 hours was another. After discussions with my husband and my Oncologist I decided I would do it again.  Running really does ground me. So does working out.  I absolutely need these things in my life.  I am a much better person and can function more when I can get a good sweat out.

Fundraising for a cause I believe in helps too.  I know I am doing my share when it comes to gaining critical funds for basic cancer research. I can’t stress enough how vital funds really are.  Lives are being saved and prolonged. People are able to spend more much needed time with loved ones.  This year I lost two friends to the same disease I have, metastatic breast cancer.   I didn’t  realize how much their deaths affected me until I said it out loud.  When something or someone crosses your mind at least once a day they must have had some affect on your life.  I have met more sisters with this disease and we share good times and tough times.  It’s always nice when you can talk to someone who gets it completely.  There are no explanations needed and no awkward feelings about any discussions.  The men and women in my “Cancer world” make me want to do more.

I whole heartedly believe in research.  I want to kick the crap out of cancer in any way I can.  I want to see my children grow up, get excited when they learn something new, see the look of passion in their eyes when they do what they love.  Elizabeth and Grace make it all worth it.   The days I go into Dana and have botched IVs or wait for hours to get test results and treatment I remind myself if my girls never have to experience this it’s worth it, 100%.  The days where I do’t feel great, but push to go on, run, play or take them somewhere fun is because of the girls.  I hope they see me as Momma, the crazy lady who runs around, shows up for almost everything and still helps out wherever she can.

To say I hate cancer is a gross understatement.  I’ve seen what it does to people, families, friendships and relationships.  A good friend of mine put it best when she said, “It turns best friends  into Strangers and Strangers into your best friends”.   I’m so thankful to have the support of my family.  I don’t think I would ever have made it this far without my husband, Mike and my mother, Marie.  They never give up on me even when I want to give up on myself.  They won’t let me. I have formed close relationships with people I have met through Dana Farber, especially my infusion nurse, Megan.  I owe a lot to her.  She is a wonderful nurse and friend.  I get bummed out if she happens to be out on a day I am in clinic.  I’m running for myself as well as those I know going through the same struggles I am.  It’s not easy raising children.  It’s not easy dealing with cancer.  It’s really not easy trying to do both simultaneously.   I would like to see more treatments – and dare I say a cure – for breast cancer in my lifetime.  Whether I do or not, I would like my children to say my mom is absolutely nuts.  She loves us and puts her whole heart into everything she does.

The 2018 Dana Farber Marathon Challenge team was able to raise $6,377,250.58 collectively. Every penny going  to  innovative basic research.  This year we have a goal exceeding $6,000,000.  Please consider donating to Dana Farber.  Words cannot express my gratitude to everyone who has supported my family and I through the years. I love you all I really do.

If you would like to donate please do so here:

http://danafarber.jimmyfund.org/goto/Katiec

Every donation is one step closer to better treatments and cures.

Thank you and as always Happy Running!!!

Boston Down, Providence Down, Cancer Up

Boston down, Providence down, Cancer up.

A little over a month ago I completed the 2018 Boston Marathon and as most people know it was a gnarly day weather wise.  As described in my post that soggy afternoon, it was Fucking Epic!  And it was, even the New York times sports columnist who ran wrote that, after I already had of course.  That day was insane for anyone involved.  Of course as a native New Englander, this was not the first Nor’easter of the season.  There were four of them in March alone, seriously.   Every week like clockwork.  I can honestly say I was fully prepared for that shit storm that ensued.  Rain doesn’t bother me.  I’m waterproof. I hate wind. It takes so much energy out of me.  Torrential rains that were wind driven took over the course for the entire day.  Not one wave made out better than another.  Many world class runners dropped out.  Why wouldn’t they?  These people are actually trying to win the race.  I was just hoping to finish with my hat on and poncho intact.

An American woman won, Des Linden.  She 100% deserved it.  No records of any kind were broken that day, but I can actually say in retrospect I didn’t think it was that bad.  The wind was tough at times, but eh, I just kept moving.  I was having a good running day, so I just went with it.   My emotions were on overload for more reasons than I can list.  I know I became giddy at one point and was even screaming Fuck Yea! to the crowd for the last few miles.  They loved it and I loved each and every one of those sopping wet fans.  Running in foul weather is tough, but doable.  Standing still spectating is crazy and no fun what so ever.  My family didn’t make it out to see me and that was okay.  Usually, I see everyone at mile 20 or so.  I love the energy my kiddos give me, but I was happy that I didn’t see them out there because I know they would have been miserable, especially Gracie.  Mike came out to mile 10, I think to make sure I was alive, exchanged gloves with me and I was off again.  I saw so many running friends and past teammates at the 13-mile water stop.  My longest stop.  I really do try and stop to say hi to everyone I know.  As I was running up the hills I started chatting with a man from Dubai.  We talked about running marathons, Boston as a City and weather.  Apparently, he had never run in the rain before.  I looked him squarely in the face and asked if he was ok.  He thought it was great.  He continued on to tell me he was running in the London Marathon the following week and that it would complete his marathon majors.  I wished him luck and thought of him on that day.  From what I heard London was extremely hot and they ran out of water at the water stops.  From one extreme to the other I guess.  I hope he finished and was able to receive the gigantic medal they award upon completion.  Mike was at mile 20 waiting for me.  Another dry set of gloves and a quick hug and I was off to the finish.  I was feeling good and happy to be out there running.  Personally, it was the best day I had in a long time.  Running helps me to feel normal.  That day I didn’t think of cancer much, just that it was a great day to be running in shitty weather.  I LOVED IT!  Dana Farber’s largest cheering section is right before mile 25 on Mt. Kenmore.  Although the crowds were thin this year, the Dana crowd wasn’t.  I got my big hug from Sandra, cheered waved and pressed on to the end.  I decided right before I turned onto Hereford street that I would ditch the poncho.  I did a little dance and tossed it into the crowd.  Someone caught it and screamed, “You Rock”!  I turned on to Hereford and it was a landmine of plastic ponchos.  Why?  Let’s face it, because no one wants their finish line picture in a poncho.   I finished, received my medal and made my way to Clarendon Street to find my sopping wet husband.  We went to check in at the Dana Farber meeting spot, had a little lunch and then continued on to Exhale for my nice hot, spa shower.

My hug

Mile 25 my hug from Sandra

Well folks, that’s where my rock stardom ended.  Exhale’s elevator had just broken down and I was unable to make it down to the showers.  Here I was drenched in my running clothes, shivering at this point.  The nice receptionist offered to call some of the nearby gyms.  I didn’t want a gym shower, I could have done that.  I wanted my spa shower.  So, instead we walked to the car, drove home, seat heat on high!  I came in was greeted by my two babies and said, “No one gets a tubby until after I shower”.  Grace proceeded to tell me I stunk, as she likes to do.  I put my jammies on and wore my marathon medal that night as I proceeded to do laundry.  Like I said before, life is humbling.  And that was my 2018 Boston Marathon.

dfmc-2018-group-shot.jpg

The incredible 2018 Boston Marathon Dana Farber team. Strength in Numbers.

Two weeks later Mike and I ran the Providence Marathon, because that’s what we do.  I liked the course.  I love the show up and run races.  I wasn’t sure I was up to running it, because I was extremely tired, more on that later, but we did.  The first few miles were slow.  I ran with Mike for the better half of it, but by the halfway point I was waiting a lot.  Mike told me to just keep going.  We made a pact a long time ago.  We run together for the first part and if one of us is having a better day than we encourage then to keep moving.  Only if one of us  wants the company, which never happens, do we start and finish together.  Both in Boston and in Providence I ran negative splits.  It’s a great way, in my opinion the best way to complete a marathon, but it’s not always easy to do.  I hadn’t planned on it but was happily surprised by it. The conditions were perfect for me.  Bright overcast, a little humidity and low 70s.  Those are they conditions I favor.  Once completed it was on to scans and back to my other world, life as a cancer patient.

Since my initial diagnosis almost three years ago, I had active treatment and then switched to maintenance medications.  For two years that first line worked remarkably well. I, generally, had little to no side effects.  I was feeling pretty good most days and hoping things would stay this way for a long time.  I had a questionable scan last summer, which turned out to be nothing.  Although I worried constantly about it.  Then again, this past January I had something come up in my scan.  This time it was something.  Progression.  The word we all dread hearing.  It was very minimal, but enough to make an adjustment to my medication. My Doctor first talked to me about 3 options, one of which was a clinical trial.  However, in February I was not eligible, so we opted for the next line treatment which was monthly double injections in the butt.  Yes, they hurt and my rear end was not a fan of them.  After my initial loading dose and one monthly injection I had scans and learned that the medicine was not working at all.  That progression had grown, again not largely, but it grew when it should have shrunk or stayed the same.  Interestingly enough I never felt like this medicine was working.  Since being switched to it I was extremely fatigued.  I would hear all kinds of things, “You just ran a marathon” (over and over and over again).  “You have two small children”.  But I can honestly say the last time I was this fatigued, drained, was prior to my diagnoses.  Extreme fatigue is the only symptom I have to draw from.  Unfortunately, it can be very hard to decipher levels of exhaustion in the cancer world.  So now what?  As discussed in February, that clinical trial my Doctor really wanted me on was now available to me along with two other clinical trials and the standard treatment regimen.   In 3 months, 3 trials opened to me.  That is how fast Dana Farber moves with these things! I’m cautiously optimistic but am also realistic that this might not work.  I’m nervous.  I have no idea how this new regimen will react and how well my body will tolerate it.  It’s absolutely terrifying.  It’s also a lot of time spent in Dana for the next 6-9 weeks respectively.  Because it is a trial there are labs, labs and more labs.  There are days I am going in to literally have them take blood from me day after day.  It bites, but I have no choice.  My Elizabeth is old enough to notice my absence and ask questions.  Mike and I informed her of my “illness”.  She knows what cancer is and that anyone can get cancer.  She knows Moms, Dads, children, cousins, aunts, uncles, grandparents even pets can get it.  She knows that surgery and medicines can help or make it stay away. That’s what she knows.  We told her I’m trying a new medicine that may help me and because it’s so new I’m helping the Doctors figure out if it can help other people.  She knows when I go for scans, pictures of the inside of your body, and why we do them.  The whole process is scary and can leave you feeling isolated.

I have had some criticisms on postings, writings and things that are important to me.  I’ll put it bluntly, for someone to tell a person with stage 4 cancer that there are people with problems and they deal with them every day and to quit complaining is absolutely insulting.  I don’t feel as though I complain.  I write to share what my thoughts and feelings are, no one else’s.  Cancer is itself isolating.  I’m not tone deaf, by any means, of what is going on around me.  I try to be kind to everyone, because I don’t know what burdens they may bear.

I decided to write about my experiences for a few reasons. First, for myself, it helps me to get thoughts out that are hard to talk about and express.  For the past few years I have been raising money for Dana Farber’s marathon team.  It’s kind of a no brainer that I would share my experiences.  I mean, I’m raising money for the cancer center that is saving my life.  It’s a win-win in my book. I get to run the Boston Marathon and they get money to research and develop better, more targeted cancer treatments.  Did I mention I’m in several research panels???  Like it or not, I’m trying to help them from every angle I can.  Lastly, I started a fitness blog about 6 years ago to share with my children and other runners and fitness enthusiasts.  I don’t even know how many people outside of my family actually read it, but it’s here for anyone to read or not to read.  That being said, I have had a tremendous amount of support and I can’t thank those who do support me enough.  Support means the world to me.  Life can be absolutely heartbreaking and cruel, and it can also be beautiful.  I’m choosing to end on that note.  Wish me luck on my new regimen and on my Birthday Run this weekend.  38 miles for 38 preternatural years!

Family at Dana Dinner_2018

My wonderful Family at the Dana Farber pre-race dinner.

Thank you for all of your love and support!

 

Happy Running!

Being a Cancer Patient on World Cancer Day

I wanted to write an update on my training for this year’s upcoming Boston Marathon, but today I prefer to share what it’s like to live with the uncertainties of Cancer. My initial Breast Cancer diagnosis was June 17, 2015. I was nearly 8 months pregnant. I was scared out of my mind. When at last my Drs had a plan in place there was a slight sense of relief. I was actively doing something to fight cancer. I gave birth and continued on with 7 months of weekly chemotherapy. Around this time ago 2 years ago I was able to get off of active chemo and stay on targeted and aromatase inhibitor therapies. Everything had been stable until now. My last set of routine scans showed something small and unrecognizable on my liver. So another test was ordered. Today, Super Bowl Sunday, World Cancer Day, I had yet another test to see further what this “shadow” is. I will see my Dr. in just under 48 hours. It is terrifying! I keep hearing how brave or strong I am and I just want to curl up in a ball and cry. I don’t feel strong, I feel exhausted. I have not been able to fundraise or run as much as I would have liked due to everyone being sick, my scans, schedules and now this issue. I was told from the start of my diagnosis it was always a question of when it comes back, not if it comes back. I have been waiting for the other shoe to drop since June 2015. I think it’s about to.

My Dr. has said there are more than a few options available to me right now. Some of which were not available at the time of my diagnosis. I’m hoping something will work. I hope my options keep expanding, because it will always be a matter of when something stops working. I’m going to throw my fundraising link up here in case someone feels compelled to donate. I can tell you I am scared shitless right now.

I’m looking for that Brady magic thing come in and kick Cancer in the ass for good! I will be watching and looking for the Pats to bring home another title. I will also be agonizing over whether or not cancer or I will win this round. Until then, go Pats!!!

If you would like to donate:

http://www.rundfmc.org/2018/kathleenc

Happy Running!

Katie

2:52

Mid December- Less than two weeks away from Christmas and so much to do. A few last minute gifts, a ton of wrapping, maybe another last minute trip to the city. The list goes on and on as it does in most homes. December is always a tough month to get a few hours to myself, collect my thoughts, run, do Momma stuff.

There is another troubling side to December and that is wondering if each holiday season is going to be your last. Since my diagnoses in 2015 I am constantly haunted by this question. It can also be a lonely troubling time for many of us, cancer/disease related or not. I often see friends and families get together as you would expect without a care in the world. I wish that were the case for me. I have been having a tough time with loneliness and depression. I have been told I have signs of PTSD. Here is a typical thought pattern.

Why do I always feel like crap? Why don’t I feel like I have any friends? Why do I get upset when others with life-threatening illnesses have a great network of friends and I do not? All of these cancer related groups helping those in need and taking care of patients going through treatment. I was always an afterthought. Many people get trips, makeovers, help, cleaning, babysitting while they go through active treatments. I never did. Once they recover/end active treatment many decide to pay it forward which is very nice. I try my best to do the same.  I still can’t believe I was pregnant with breast cancer.  I wish someone was there with me when I was given the news.  I thought my Doctor was compassionate and caring.  She never even called to see how I was or if I was even alive.  

I have never been one to fit into any group. I was always too young, then too old, too serious, not serious enough. I just can’t seem to fit in anywhere. I don’t even have the right type of cancer to fit in anywhere! I’m considered young, because I am under 40. However, most of the younger cancer patients are worried about relationships, freezing eggs, dating, etc. The other group tends to be the polar opposite. They are older patients with teenage or adult children and grandchildren. I am not either of those. I am married with very young children. I know there are more people out there like me, but it’s not easy to spot them. I’m considered a lost cause by some standards. Feeling left out, dropped and forgotten about are the worst feelings ever. I have or had friends I never hear from anymore. Very few family members take a minute to ask me how I am and I feel as if I can’t say anything to anyone in fear that they really don’t want to know how I feel or what’s going on in my life. Social media, you know bookface, can amplify these feelings. I see pictures of my “friends” out having dinner/drinks, play dates and it’s another constant reminder of how alone I feel.

I have my running (not nearly enough right now). Boston training season has officially kicked off. I usually maintain a good level of running even when not training, but my regimented program starts after the holidays. I dedicate as much time as I can to my children and family this time of year. My hope for tomorrow is to get out for a solid 2 hours of running, but it is 2:36 am and I have a feeling I will not be out as early as I want to be. I run for my health and my sanity. It is a time for me to gather my thoughts and be free from almost everything. Much of the time I have my little running buddy, Gracie, with me. As much as I love being able to share my runs with both of my kiddos I do enjoy running out the door, keys and IPod in hand, by myself. I don’t get much alone time. Ironic, huh, being lonely, but not alone. I’m still trying to figure that one out.

Here’s to cathartic runs and sleep! Oh, since I am about to complete paying for my BAA application, a donation to my cause would be appreciated greatly.

http://www.runDFMC.org/2018/kathleenc

As always, thank you for taking time to read what the life of a cancer patient is all about and for all of the continued support.

Happy Running!

Katie

Boston 2018 or Bust

It’ s been a while since I last wrote an entry. Life has been busy. Since my last write up, I have run my annual birthday run (37 miles this year), ran the Newport Marathon, ran the New York City Marathon and countless miles in between. I have also been through 2 sets of scans and numerous treatment appointments. My oldest daughter Elizabeth graduated from pre-school and started kindergarten. My little Gracie turned 2 and is a very typical, active 2 year old. She keeps me on my toes and away from typing.

I took a leap of faith and signed up to run the Boston Marathon for Dana Farber again next April. To some this may sound dramatic, but if I am here in April it means I have outlived the mean of women and men diagnosed with my type of Breast Cancer. It is an honor to run for this amazing organization. A few weeks ago Mike and I attended the 2017 DFMC check presentation. As a team we raised 5.9 million. I am proud to be a part of that. The question I had was, “Where is this money going”? Luckily, there was a Dana Farber physician there to tell us what the past few years’ fundraising has supported. Dana Farber has new on-site laboratories. Right across the street from where I receive treatment and see my Doctors are laboratories and top scientists actively working to find cures for various types of cancer. Cutting edge research across the street in Boston, MA.,   this is where our money is. In my opinion, it’s worth every penny!

Right now my health is good. Every set of scans brings me back to square one. It’s a guessing game some days. Physically, I feel good most days. I am able to keep up with the demands of being a Mom of a 6 year old and very active 2 year old. I am in Dana Farber every 3 weeks for treatment and am able to run an average of 50 miles a week. I do get occasional aches and pains and feel tired, but let’s face it, I’m getting older, I have young children and a mountain of stress over my head. Running and working out are cathartic for me. Unless people know my story, no one would ever guess what the past 2.5 years of my life have been like. Since June 17, 2015 my world flipped completely out of whack. I have been shaken to the core and questioned every possible belief and feelings of certainty that I had about anything. It’s impossible to imagine unless you have lived through it.

A few days after I completed Boston back in April a friend’s daughter died from the same disease and it struck me very hard. Anytime I hear of someone dying from cancer, more specifically breast cancer, it’s a blunt reminder that cancer kills. This particular death hit very close to home and changed me. If you keep up with my Facebook posts you might already know about her. Christie Hess was a beautiful woman, my age, with two young girls. I became friendly with her mother through an online support group. We had a lot of similarities so I reached out. Debbie and I continue to check in on one another. I constantly think of Christie and her family, the pain and the sadness left by Christie’s absence. It is just so unfair! So unfair!  

Christie_3

Christie Hess lost her battle as a 36 year old mother of 2.

Me NYC 2017

Carrying Christie with me, NYC 2017

Although I did not know her personally, her death felt like a close family member’s. Something really stuck with me. I tried to honor her as best I could through the New York City Marathon. I carried her photograph in my hands and looked at it a number of times. When people saw the picture of Christie with her babies on the back of my shirt they would ask and I would tell them about who she was. I talked about her young children and her family. They lost their mother to breast cancer. Christie and her girls deserved more.

I work every day to make sure that I will see my two little ones grow up. 

Lizzy and Gracie Halloween morning_1

How could I not fight for these two gorgeous faces!

I fight through anxiety, exhaustion, depression and every day struggles to try to be here for many years to come. Mike and I are constantly reading about exciting new research and trials happening here at Dana Farber.   Most recently, they have had some groundbreaking studies and clinical trials in CAR-T cell therapies. A very down and dirty explanation of what CAR-T cell therapy is: Blood is extracted from a patient, the blood is then and genetically engineered to sprout structures called chimeric antigen receptors (CARs) on their surface. This blood is then re-injected back into the patient to help the T cells identify and attack the cancer throughout the body. The success in this has been in the liquid cancers, but they are looking to see if it will be successful on solid tumors. I’m no expert so I have a link to the Dana Farber site if you would like to read more about this breakthrough:

https://www.dana-farber.org/cellular-therapies-program/car-t-cell-therapy/

So, again, I am asking for any donation you can make to help me aid in curing this cruel disease. Cancer affects everyone and it is unfortunate. Scientists and physicians are on the cusp of a lot of breakthrough treatments and hopefully a cure! I want to be a success story, defy the odds and ensure my children never know the pain that is cancer.

As most people know I am happy to share any experiences I have or answer any questions you may have about anything. I invite anyone who reads this to come into Dana Farber with me to see the world-class care, compassion and advances they have. Please consider donating to this pivotal cause. 

Thank you for your continued support!

http://www.runDFMC.org/2018/kathleenc

Additionally, I need to thank my mother Marie and husband Mike for their unwavering devotion to my health and cause.

Sincerely,

Katie Crowell

Boston 2017 Recap and Thanks

So here it is, 10 days later and I’m just getting to this. I had this grandiose idea that I would be able to write my marathon recap filled with regaling tales from each mile and how it felt to be back running this course. What can I say, life gets in the way of best laid plans. My poor little Grace had a terrible cold and fever by the end of last week. Clearly she was my focus. This week I am dealing with the awful death of someone who I came to admire greatly. Yes, it’s been that kind of week.

So here goes,

Since the day I found out I was pregnant with Grace I had been planning to come back and run Boston again. I did so after Elizabeth was born and was planning on it again. Sure, there would be other races and Marathons, but Boston is different for a whole host of reasons. It can be an extreme training season, fundraising, I met my husband on the course and of course it’s my hometown. Not to mention, the most respected marathon in the world. There are other great ones and very respected courses, but over the past 13 years I learned there is a different level of respect for the Boston Marathon. When you travel, especially for running, there is a certain prestige to wearing the Boston jacket. Even if you’re not fast, or qualified, which is to many the ultimate running goal, people know you have gusto and admire a Boston runner.

Here in New England we have no idea what the weather will give us day to day, even hour to hour. This year, January and February were very mild. I have tan lines from some of my winter runs. March was winter. It was cold, snowy and more winter like than any other month. It stunk! My training went as well as it could. I ran 45-60 miles a week. I was able to dodge a lot of the snow or rain that we had and feeling pretty good. On my last long run of the season, it poured halfway through the run. It was mother nature’s way of saying, not so fast, here’s a windy, rainy, nasty day where there were ponds on the sidewalks and rivers running down the streets. It was fine, but interesting that I had just remarked how lucky I got with weather this year.

My goal was to try and make 4 team training runs, I made one. Ha! What do you want, I have two little kids and I had to adjust my schedule to theirs as well as my mother’s and husband’s. In the end, it all worked out. By the time Marathon weekend was here I was psyched! Mike and I took the girls to the Expo, not recommended to anyone ever, to pick my number up. We tried to make a nice afternoon for them out of it. Lizzy would have been fine, but Ms. Gracie only wanted one thing, to run around like a little nut.

Lizzy and i at the expo April 2017_1

Lizzy and I at number pick up.

Not a good idea with enormous crowds of people all around you everywhere. By the time we got home on Friday we were exhausted from chasing 24lbs of adorable little girl around. She’s a little spitfire, keeps me on my toes. Grace will flash her little smile, twinkle in her eye, and then do as she pleases. Uncle Dave Markunas, I’m counting on you to make sure she stays out of trouble!

 

Saturday was a lazy day and it needed to be. Mike was volunteering at the DRB/TARC 50k/50miler in the morning and then we ran a few quick errands, had a nice family dinner and called it a night. I knew Sunday and Monday were going to be nutty so I tried to keep it low key for everyone. Sunday was Easter. The Easter bunny made a stop here to Milton and was on his way. It was a beautiful weekend and Sunday was very warm. Dana Farber had their Pasta Dinner at 3pm so that was all we had planned for the day. I have been to quite a few of these dinners for various teams in the past and I can say this was incredible! For starters, it was enormous. Something over 1,000 people were there, probably more. The food was excellent and it was nice to have my family there. Both Nana and Grandma kept the girls occupied running up and down the halls of the Marriott. I felt bad that my mother missed most of the program, but do feel it was a little heavy for the girls to handle. Various people spoke about Cancer Research, the dire need for it and what the Claudia Adams Barr program has allowed the best researchers to uncover. There are many patients at this dinner who have runners running in their honor. There are also many runners who run in memory of those who did not survive their illness. They played a short video with beautiful photographs of children who are gone, but never forgotten. I cried through the whole thing. My situations sucks, but I still believe that losing a child to this shitty disease is worse. Losing a child, in any form, has to be the worst thing ever!!! Period.The party concluded and we returned back home. After some celebratory cupcakes for Grandma’s birthday I packed up the girls and they were off to Nana and Pampy’s for the night. It was quiet and I was anxious. I was anxious about the logistics of the next day. I knew I was going to run and I was 99% sure I would finish, but I always get nervous about oversleeping and not getting out to Hopkinton on time, remember Seinfeld? I didn’t sleep much, but when Monday morning came I was ready.

Since I had everything ready to go, I changed, ate, and was off to Hopkinton. Mike drove me in. They have shuttles available to Runners’ village so that’s where he dropped me off. I hugged him and thanked him for all of his support. A few tears, a porta-john pit stop later and I was on a shuttle. Things have changed since 2012, the last year I ran Boston. Since the bombings in 2013, there are no more bussing runner bags to the finish. Not that you need much, but it’s nice to have a few comforts before and after the race. I was wanded down 4 times before the start of the race. I was patted down twice. It was warm on Monday so there wasn’t much to pat down on anyone. It’s a shame really and a little backwards in my opinion. I don’t mind extra security, but anyone can walk on to the sidelines of the course and the runners have the extra security.

This was the first year I didn’t sit at Runners’ Village with all the other runners. Dana Farber has a “Refuge” in the St. John the Evangelist Church in Hopkinton. I walked down with another Dana runner. It was actually really nice to be able to go inside and be out of the sun. There were private bathrooms, our own porta-johns, food, an area to decorate your shirt, quiet rooms and all sorts of other things to keep your mind and body occupied before the 11:15am start. I talked to a few people and then as it got closer began my way to the start. As luck would have it I ran into a very god friend whom I have known from years of running, Barbara Grandberg. She is a legend in her own right. This woman is a machine; tough as nails and has one of the kindest hearts I have ever met. We talked a bit and before I knew it we were in the starting corrals. I missed Mike a lot at this point. Other than my first Boston run in 2006 we had run it every year together. I was quieter than usual. I had a friend on my mind. Her daughter was fighting cancer and slowly losing her battle. Here we were two women, the same age, fighting the same disease, one doing seemingly well and the other not at all. It wasn’t fair. We both had two little girls and underwent some chemotherapy while pregnant. I didn’t know her personally, but became quite friendly with her mother. It breaks my heart to say it, but she passed away since then. So to the kind person at the start who asked me if I was okay, thank you.

And go…

I crossed the start and was extremely conservative in pace. Boston is a punishing course and is downhill for the first 15 miles. It’s very easy to start too fast. You feel good, everyone is excited around you and it’s electrifying. I kept it slow. Many, many people came up to me and patted me on the back and told me I was inspirational. I thanked them all. The best ones were when other survivors came up and acknowledged. It’s more like hey, we’re here. It’s a hard thing.

Shirt

Ran with this on my back.  I felt a little cocky, but whatever, it happened and that’s that.

I don’t feel inspirational. I’m guessing they thought I was a cancer survivor who decided to run the marathon when in fact I am a runner who just happened to get cancer at what I can confidently say was the most inconvenient time of my life. Trying to grow a life inside you while you are fighting for your own is something I still have trouble wrapping my head around. But it happened and that’s that.

I wanted to smile at everyone that said my name and I did! I high fived everyone I could at Wellesley College, stopped at the 13 mile water stop, because I knew someone at every table. I could have cared less what time I finished. It was windy and warm. I think the wind got the best of some people. Maybe the heat did too, but most people will adjust for heat. Newby’s tend to forget wind is another factor to adjust for. It sucks the moisture right out of your body. And some days are just not good running days and we all have them.

As I approached the 30K mark on the hills, I knew my family and children would be coming up soon. I’m a decent hill runner. I actually run faster on hills than flats a lot of the time. I have no idea why, but I just enjoy them. Check with Mike, every year I used to pass him on the hills. And then I see my Dad’s head and Lizzy’s little face. I stopped to give them all a little hug and say, “I’ll see you in a little bit”. One of my brothers was holding Gracie. I gave her a little kiss. She said, “Mama”. and smiled. Then I was off again. My mother remarked that Grace looked baffled by what had just happened.

Just beyond heartbreak hill down by BC, a Dana runner had just yacked all over the street. She was kneeling down so I, along with two other Dana runners, went to her aid. I think was on the fence about calling it quits. We were right at the 22 mile mark and she looked tired. The three of us physically helped her up and walked with her a bit. I offered to walk with her as long as she needed. I stayed with her for another few minutes until she looked okay to go again. I tried to lighten the mood. I recalled the year I threw up over the finish line and the photographer caught it. It was disgusting, but I did feel better afterword and I told her that. It might have actually saved her race. I blame the Gatorade endurance, but it can be any number of things. Once she looked okay enough, I took off and was back at it, down Beacon street into Brookline. Just about then the on shore breeze hit. It always does. I just kept moving.

By the 24th mile my stomach was feeling queasy from that Gatorade. Whatever, I just kept moving forward. I see the Citgo sigh getting closer and closer and a sea of blue DFMC shirts. On to Mt. Kenmore. It’s an overpass, but it feels like a mountain at this point. This is also where Dana Farber has their largest cheering section I said hi to a few people, mainly Matty’s mom Sandra and keep moving.

I didn’t want to stop because I had a good momentum and didn’t want to tighten up.  I had stopped too many times already. Rounding onto Hereford street, I had a lump in my throat, because I was alive and running. I was exactly 22 months out from my initial diagnosis and thinking how surreal the past almost 2 years had been. I turned on to Boylston and saw an old friend, the finish line. I smiled and waved to some guy screaming my name. I saw some more family along the way, looked up at my old office and crossed the finish line. A young woman came up to me and thanked me for getting her through. She said every time she stopped to refuel she looked for me. I guess I kept pace for her. She told me it was her first marathon. I hugged her and congratulated her. I got my medal and a cape. I took extra water and missed the food station all together. I made my way to the Hancock tower where Mike was waiting with a big hug and my clean clothes. My feat hurt and I stunk. I checked in at the Dana Farber runner check in, had a little bite to eat and then off to Exhale for what was the best shower I had in weeks. No kids running in, Gracie wasn’t throwing toys at me and I was able to stand under the water as long as I wanted. Mike and I made two post marathon celebrations and then it was home to be Mom and Dad again. Lizzy waited up for us and Grace was still awake. I gave them each a kiss and hug, tucked them in and began to do laundry. What to you want, I didn’t want to deal with my stinky clothes in the morning.

Since then, I have run 6 or 7 times. I’m signed up for NYC this fall, but my next big run is my annual birthday run. I love getting older, another year, another mile. I consider it a privilege. Thank you Dave McGillivray for inspiring me with this fantastic idea!

So, how did we do? I ran a 4:57 this year. Not my best time, but I wasn’t planning on making time this year. I would have loved a 4:30, but it wasn’t in the cards this time. The flip side is we raised a large amount of money for Cancer Research, not awareness! As of today, my total fundraising efforts are $15,252.40. Thank you, thank you, thank you for all of your continued support and help. I couldn’t have raised any funds if it weren’t for all of my generous donors. Dana Farber makes things happen. I was listening to someone speak at our team dinner who just happened to be a physician and she said, when Dana Farber does something, everyone does. They are truly at the forefront of pioneering more treatments and possible cures for certain cancers. That’s something I want to be a part of, finding cures. With your help it can happen. Collectively, our team is closing in on the $5 million mark. 100% goes to Research! Research! Research!

Boston 2017_2

Marathon # 22 in the books!

Team 2017

The incredible Dana Farber 2017 Marathon team. Strength in Numbers!!!

Because the books aren’t closed yet I will throw up the link one more time until next year. www.runDFMC.org/2017/kathleenc

Again, thank you all for your support.

Happy Running!

Katie Crowell