Sunday, April 7, 2013

Shameless Self Promotion

And, hey, I was in the newspaper again last weekend! 
http://www.twincities.com/turningpoint/ci_22901426/40-year-old-cancer-survivor-prepares-special-marathon
Hey everyone - if you're still out there - wondering where I've been?  What's been going on?  Do I have hair yet?  Why I haven't been writing?  Well, for the most part, no news has been good news.  I've just been busy, and truthfully, sometimes I just don't want to write about having cancer or anything even remotely related.

I actually have written a couple new blog posts, but on a new site.  I've signed up for a new adventure, the Million Dollar Marathon, and I have a blog on that website.  Go to http://coasttocoastforcancer.org/cyndi/ if you're interested.

Just to give you some information first, the Million Dollar Marathon is a 40 day, 4000 mile event that will take place this summer.  160 cancer survivors, caregivers, and advocates will run a relay of marathons from the Pacific Coast in Ocean Shores, Washington, to the Atlantic Coast in Rehoboth Beach, Delaware, starting on June 21st.  I'm not sure where I'll run yet, so that means I'm not really sure when I'll run.  Along the way, we'll have big celebrations and cancer advocacy events in Ocean Shores, Denver, Des Moines, Washington DC, and Rehoboth Beach.

Winter is ever so slowly relaxing its grip on Minnesota, and my training is off to a good start.  So is my fundraising.  If you want to know more about that fundraising thing, go to http://www.crowdrise.com/RunCyndiRun.  I've pledged to raise $7500 to benefit Above & Beyond Cancer, a great charity whose aim is to elevate the lives of those touched by cancer.  In 2013, the organization is focused on reducing new cancer cases and cancer recurrence through programs that emphasis diet and vigorous physical exercise.  The Million Dollar Marathon is also working to raise funds for cancer research and programs that support cancer survivors and their families. 

I'd love it if you would support me in any way you can.  Donations are key, but if you can't donate, how about spreading the word?  Know a business what might like to support me?  Want to help me with my training?  And there's always...donations! :)

http://coasttocoastforcancer.org/cyndi/
http://www.crowdrise.com/RunCyndiRun


Saturday, October 20, 2012

This is it!

I wrote this title in response to a post I wrote about a year ago, "Is this it?" - meaning I'm done, that's that.  But as I typed it, I realized it also meant, this is life, this is what we have, take advantage, do it, live it.

People who have gone through cancer treatment have different feelings about calling themselves survivors.  After going through the leukemia treatment, I proudly wore the badge of survivor.  I wrote it on my Team in Training jersey for multiple events.  What didn't kill me made me stronger, right?  I still felt this way after going through the MPNST as well.  But after going through yet another cancer diagnosis, my feelings about the term survivor began to waiver.  I felt that every time I called myself survivor I got kicked in the face.  How could I be so proud of surviving cancer when overcoming one would just lead to another one?  What did it really mean to be a survivor?

Sometime during my course of Renewing Life classes, I started thinking about the idea about quality of life rather than quantity of life.  That my focus shouldn't be so much on each cancer and survival, but about living my life to the fullest, thriving through - and beyond - cancer.  I started calling myself a cancer thriver.

I had a follow-up appointment with my oncologist a couple weeks ago.  As mentioned previously, it was all good news, but sometimes good news can be scary in its own way.  You have this big void in front of you, with some scans every once in a while, but you just have to trust that your body is healed, that there are no scary cells growing inside you any more.  I think this was especially scary this time, because I'm not just concerned about the most recent cancer, but about the cancer before that, and about any new cancers that could be lurking.  I read a book about preventing and treating cancer naturally, and I started taking all the supplements that it recommended: IP6/inositol, vitamin D, lycopene, vitamin C, maitake mushroom, green tea, turmeric...it got to be a lot of pills and a lot of expense, but I was afraid not to take any of these supplements - what if it was these pills that were keeping cancer at bay?  But I can't bankrupt myself with supplements.  I can't have scans every week, can't have constant PET scans to look for new cancers; I just have to trust my body.  My doctor and I went over a plan for going forward, and I think she understood this concern about the big void.  It had already been a few months since my last appointment, but, as much of a pain it is to have constant appointments, it's kind of reassuring.  You've got people checking on you, taking care of you. 

At some point I just have to trust my body.  Treat it well.  Live healthy, and just as importantly, live well.  I've said before that none of us know how long we have.  I've made changes in my life for the good, relieving underlying stress, changing my diet, my lifestyle.  I don't always do a very good job, especially these last few weeks as I've been on the road almost every day.  But I refuse to be hard on myself for that - I don't need that.  It's still a big step forward.

So, even though  or maybe because - I've dealt with one more cancer since a year ago, when I posted "Is this it?," I feel more positive.  It's still scary, but I'm getting more comfortable with the void.   And, cancer survivor, cancer thriver, cancer ass kicker - I'll answer to them all.


Sunday, October 14, 2012

20 Miles

This morning I ran 20 miles.  This is the longest run of my training; next week I'll run a half marathon (13.1 miles), then the following week my longest run will be eight miles.  Then it's the big day, three weeks from today!  Interestingly, my longest run coincided with my being in the St. Paul Pioneer Press (http://www.twincities.com/health/ci_21751936/turning-point-st-paul-woman-ready-run-new).

An old hip injury started bothering me last week, and that continued to be my biggest problem today.  I was definitely tired (and I have to run 6.2 miles more than this on November 4th! /: ).  But overall, I was very happy with how I did, especially considering that all my runs this last week SUCKED.  There was the hip pain, plus Tuesday at my oncology appointment I had a flu shot and a pertussis booster, which made me tired and achy.  Whatever it was, today it seemed to be gone.

Of course, a big part of that was likely due to Jeanne and Nancy, members of my running club that ran with me.  Both were running shorter distances, but Jeanne organized it so that one of them was always running with me (oh, if I only had that in New York!  Wait, I'll be running with 46,999 of my closest friends...).  I assured them that I can do some of the miles on my own, but, truthfully, it's really nice to have someone to talk to (or, this morning, it was more like listen to).  Plus it makes you accountable when you say you're going to meet someone at Calhoun at 6am. (:

Jeanne and I started out in the dark with our headlamps, running along Cedar and then through Wirth Park.  Getting up early enough to start running at 6 was quite painful, but I really enjoyed running at this time of day.  It started getting light out as we neared our turnaround point at four miles, and the bird activity really picked up (lots and lots of robins, but I also heard the feeble song of young White-throated Sparrows, and a Pileated Woodpecker flew over our heads).  Right after we turned around we saw a frog in the middle of the road, who I think was too cold to move, so we rescued him and carried him out of harm's way.  Eight miles saw us back at Calhoun, where we met up with a skeleton crew from the running club (the small turnout was not a surprise, this being the week after Twin Cities Marathon plus a number of our crew were running the Pike Island Open).  Next we headed out on the Greenway, and at the first water stop (11 miles), Jeanne and Nancy traded places.  We got to see the construction on the Sabo Bridge, and eventually made our way to the river.  At this point, mileage was just under 14 so I ran a little extra on the river road.  

As we made our return toward Lake Calhoun, I really started noting those miles ticking away on my watch: 17, 18, 19...19.53...we came off the path and started heading toward the parking lot and I started choking up.  Oh boy.  We made it back to our cars and the rest of the running club at 20.17 miles, and I lost it.   I got big hugs from all five of these friends, wiped my eyes, and then was ready to eat!

I've been really surprised to my emotional response to finishing some of these runs.  Last week I got choked up when I finished the Twin Cities 10-Mile, and that's a lot shorter distance than my recent long runs.  It's not that I don't readily cry (just give me a sappy commercial, or a good love story - I seem to especially find the tear jerkers when I'm on airplanes), I guess I just didn't realize what a big deal this was, to be training and running a marathon so soon after all this cancer crap.  I think it also just means that I'm doing this - no matter how long it takes, how un-pretty it will be, I'm going to cross that finish line in Central Park.  Kathleen and Ramona, be prepared - you may have a blubbering mess to deal with in New York!

Saturday, October 13, 2012

New York

My last marathon was Twin Cities 2006.  I'd run roughly one a year for the previous five years, and I knew I was ready for a break.  My heart just hadn't been in this one.  In June 2008 I was watching Grandma's Marathon, and decided I was ready again.  I decided on Austin, Texas, in February 2009.  But I live in Minnesota and I don't really like the cold.  After some cold weather runs - and some cold weather where I didn't run /: - I decided to switch to the half.  But it was still the first time I'd ever done anything that even resembled training through a winter in years, and I was happy with my time in Austin.  I followed that up with another half, Grandma's, while training for my first triathlon, and then broke my arms. 

By early 2010 I was ready to try again.  My best two pals and I decided we wanted to run the New York Marathon.  I'd gone to watch my cousin's wife run it in 2008, and seemed like an amazing experience: all five boroughs, lots and lots of crowd support, and lots of lots of runners.  I knew it was a lottery to get in, but how competitive the lottery, we'd find out.  None of us got in that first year.  Ramona and I decided to run the Miami Marathon in January 2011, but an even crueler winter ('"snowmageddon") put the kabosh on those plans.  In addition, I was feeling fatigued enough that I went to the doctor, where I found out I was vitamin D deficient.  My training - and performance in Miami - were fairly lackluster.  It was shortly after I got home from Florida that I first noticed the lump in my arm.

Before I did anything about that, though, we all tried for New York again.  This time Kathleen got in.  Last November, after my four surgeries and radiation, we traveled to New York to watch her run the marathon.  But just days before we left, I had found the lump in my breast.  I'd seen a doctor and had an MRI.  And I got the news that I needed a biopsy my last morning in New York.  You know the rest of that story (assuming you've read all my other posts).

New York is a HUGE marathon - 47,000 runners.  It's so big that start times are spaced out over four (I think) hours and runners are routed on different streets for the first few miles.  Even so, getting in is really tough.  When we first started trying to get in, in 2010, there was a policy that if you didn't get in for three years straight, you'd have guaranteed entry the fourth year.  Last year, they decided to get rid of that policy, because if they continued to give everyone guaranteed entry at four years, they wouldn't be able to let anyone in through the lottery!  We were the last group they were allowing guaranteed entry at four years. 

So, early this year, while going through chemo, I decided I would try for a third year.  I felt that if I didn't try this year (and, I assumed, once again be denied, and then receive guaranteed entry for 2013), I would never run this marathon.  And in late April, I found out that I got in.  What timing!  My friend Ramona didn't get in and was hoping I would defer to 2013 and run it with her.  But the marathon is $255, and I would have to pay it twice if I deferred.  But more importantly, I started thinking about training again, that it would be good for me.  Due to the crowds, it's not a fast race - perfect!  Time limit?  23 hours, according to my run club coach - again, perfect!  So I decided I would do it.

Training for a marathon when you have no base, training while undergoing radiation is not ideal.  What's been even more challenging has been trying to train while on a crazy travel schedule.  There are times when I feel I have no business running a marathon right now, when I'm so slow and out of shape.  I wasn't particularly fast before, but there's definitely a part of my ego that's not happy about  coming in with the back of the pack.  But then I remind myself to be proud that I've made it this far - that I'm running at all.  I think my oncologist was thrilled the other day to know that I'm doing this.  Where would I be in my recovery - physical, mental, emotional - without this goal?

I'm back!!

Left you all with quite a cliffhanger there...sorry about that.  To catch you up as briefly as possible, I got the best possible news after surgery: complete pathological response, or in English, they looked through all the cells that were removed and they didn't find a single cancer cell.  This was the great thing about doing chemo prior to surgery - confidence that the chemo did it's job.

But I wasn't done yet.  I was still supposed to do radiation.  I pushed back a bit - do I really need it if we know there weren't any cancer cells left?  I know the studies are all about lumpectomy plus radiation, that if you don't want radiation you have a mastectomy, but these studies are of everyone, including patients who had surgery prior to chemo and couldn't monitor whether or not the tumor was gone, and definitely not just of patients like me, where we knew the cancer cells were gone.  What convinced me to do the radiation was the fact that precancerous cells had been in the pathology.  This is to be expected, as chemo doesn't kill precancerous cells, but if you find someone with precancerous cells only you would treat them with a lumpectomy plus radiation.

So I started radiation in late April.  I had about the same number of sessions I had for the arm, I think it was 32 or 34 (it's actually kind of nice I don't remember (: ).  I took a leave of absence again, since I couldn't travel.  I think I took eight weeks, a little extra at the end for recovering.  You'd think with eight weeks of not working I'd get some blog writing done, but I just wasn't very interested at the time.  I felt pretty good throughout, maybe just a little bit fatigued, so that's not why.  Perhaps I was distancing myself from everything, I don't know. 

 The best thing I did while on leave was take part in a program at Pathways called Renewing Life.  It really was perfect timing, as usually I couldn't participate in a series like this (and this one was nine weeks!), due to my work travel.  This was just an amazing experience.  Everyone in my class was dealing with a life threatening or chronic illness (although you don't have to be to take part in this class if you're interested), and the insights brought each week's session were just so great.  The premise of the program is using your crisis as an opportunity for personal growth and renewal.  I gained a lot of insight about my self and my life.  I might share some of them, but let's get through the update first!

My last day of radiation was June 13th.  In July I had an MRI of my arm, and chest CT.  Of course, just like my first chest CT, it suggested something weird with my liver.  So I had an MRI, and - false alarm!  Nothing abnormal!  Oh, and the arm and lung scans were all good too.

I haven't had any further imaging or the breast cancer - this will be either an MRI or a mammogram every six months (so, actually, the same as I was doing before, but just at opposite times of the year rather than at the same time).  I saw my oncologist this week, and we talked a lot about what will happen going forward.  She's planning to talk to the orthopedic surgeon about my arm, and set up a plan for regular scans.  Even though I didn't have any scans to learn about, it was a good visit.  I could really see that my oncologist was excited that I'm doing so well, especially the fact that I'm training for a marathon.  What's that, you say, marathon?  Yes, the New York Marathon, to be exact.  And I think that means it's time for a new post!

Tuesday, March 6, 2012

Big Day Tomorrow!

Finally, I really feel like I'm moving forward - the day of surgery is tomorrow!

I'm hoping it will be fairly anti-climactic - it's a short day surgery, with just conscious sedation and not general anesthesia. Hopefully I'll be home by mid-afternoon. It's kind of a goofy arrangement: I show up to surgery at the hospital at 6:30am, after which I'm sent over to the breast clinic in the Masonic Building next door (they're connected - at least I don't have to walk outside in a hospital gown. But still...) where imaging (I'm assuming ultrasound but didn't think to ask) will guide a radiologist who'll place a wire through the (former) tumor site. After this, I'll go back to the hospital and be prepped for surgery. The surgeon will use the wire to help guide him to the correct spot. How he'll know exactly what to take I need to ask before surgery (you'd think I would have thought of this when I met with him and he explained the procedure a couple weeks ago). So anyway, I get to walk around with a wire sticking out of my chest, probably in a hospital gown. You'd think they could have made the logistics a little simpler, considering how many lumpectomies are done at the U of MN!

When I met with the surgeon, I was told that in cases like mine, where the tumor no longer is apparent via imaging, about 40% of cases show no sign of cancer cells after surgery and pathology examination. So keep your fingers crossed for this best case scenario! By the way, I had another breast MRI last week, which continued to show no sign of the tumor. I didn't ask the surgeon about whether those 40% had a negative MRI at the halfway mark in addition to after finishing all their rounds of chemo. (:

A few people have asked me how I'm feeling going into surgery. I'm not nervous. I'm just so ready to get this done and move on! I'm so happy to be beyond chemo and moving into the next phase of treatment. I've still got a long way to go, as I won't finish radiation until early June, but at least I'll be getting my hair back (I hope!).

This will be my sixth surgery in the last year (three arm, one abdominal, one for port placement and lymph node biopsy, then tomorrow lumpectomy and port removal) - think that maybe also contributes to my lack of nerves? Oh, and there are also the two arm surgeries to repair my broken elbow and wrist in 2009 and to remove the plate in 2010...

Other updates, finally seeing a bit of improvement with the lymphedema, but that continues to be my greatest frustration (besides baldness) right now. The lymphedema needs its own blog post, hopefully that will appear soon. A blood clot was discovered in my right common femoral vein (right groin) so I get to give myself lovenox (blood thinner) shots for the next six months. And I found a personal trainer who works with cancer patients, especially those suffering from lymphedema. Hopefully that will also be covered in another blog post soon as well...

Time for dinner - my last meal for a while! I will try to provide on update on my surgery in the next day or two.