More Thoughts

Yesterday I found out that an acquaintance died suddenly last week. I knew Carl from when I was a culinary assistant at Kitchen Window. He was a wealth of knowledge on anything food, and was one of my favorite teachers at their cooking school. I hadn't volunteered at a class for a few years, but whenever I stopped in I'd always look for him. If he was there, I could always count on staying a little longer due to whatever conversation we'd get into.

Also this last week, I learned of the death of a friend of a friend, this one from cancer. It had come back in her brain and things didn't look good. But, expected or not, her friends and family had to say goodbye.

Losing someone is always terrible. Not to be morbid here, but none of us know when or how we'll go. I could battle cancer twice only to die in a car accident. The point is, we're here today. Take advantage and live your life. Tell those around you that you love them - now. Want to run a marathon? See the Great Wall of China? Change your job? Think about how you can make those things happen.

One of my favorite quotes:

This is the beginning of a new day. God has given me this day to use as I will. I can waste it, or use it for good. What I do today is important, because I'm exchanging a day of my life for it. When tomorrow comes, this day will be gone forever, leaving in its place something that I have traded for it. I want it to be good, not evil; success, not failure; in order that I shall not regret the price I paid for it.

- W. Heartsill Wilson

Post-radiation, Post-celebration

Thanks to everyone who came to the celebration last week. There was a good turnout, and it was interesting - and also a little overwhelming - to see so many different friends and family all in one place.

Fighting cancer doesn't involve just the person that was diagnosed. And I'm not talking about the doctors, nurses, and radiation techs. It takes a lot of support from everyone you know. And, in turn, I don't think it's always easy to be the support crew, either. That's why I felt so compelled to celebrate with everyone.

My arm is already looking a lot better. It started peeling around the time of the party, and is almost done peeling (I think). Now it's just itchy and a bit sensitive. I'll wait another week or two to schedule the MRI that will that look for any residual cancer.

I did go ahead and have a lung scan on Monday, though. I had one initially, which was clear, and was overdue for the next one. I think I once read that MPNST is a persistent cancer that likes to go to the lungs, so I was a little anxious to have it done! Wednesday I got the news that everything looks good, yay!

DONE

I couldn't sleep this morning. I lay wide awake at 4:30, so read for a couple hours before getting up. I went in for my appointment at 7:45 - everyone seemed to be driving extra slow today!

I got called back right away, but wouldn't you know it, they had to reset the machine and I had to lie there for a while. I started thinking about finishing, what I would write in my blog post, and...tears came.

The machine was ready, I got my treatment, and when the technicians came in one remarked about how of course there were some issues on my last day. I realized she was maybe saying that because of my tears, so I told her I was crying because I was done.

I have been going to the University five days a week (almost) for the past seven weeks. As I was leaving, I thought about tomorrow's appointment - oh, wait, there isn't one! I'm really, really done.

The University makes it as simple and pleasant as possible. I have free access to a sweet parking spot. It's quick. I like the technicians. But it's radiation. I had to go every day, my arm is starting to suffer, and I've been in this phase of surgery plus radiation for a looong time. I'm so ready to move on. I was so fortunate to be able to mostly continue my life as normal during treatment, but now it can be even more normal. As normal as life for someone who's been through two cancer diagnoses can be.

After treatment, I saw Dr. Cho, which was fairly anti-climactic. He breezed into the room, took a look at my arm, said don't put anything on it, I'll see you in a month. And that was it.

My sarcoma journey is not over by any means. When my arm heals a bit, an MRI will be done, along with a CT scan of my lungs, to see if I'm in remission. The scans will be repeated regularly over the next five years. Just as I freaked out about every bruise 20 years ago, I'm sure I'll freak out at every lump or bump or anything that just might not feel right. But this is the milestone I'm at today, and I'm celebrating.

Hanging tough is so much easier when you have a huge support crew. Thank you to all my friends and family, for all your encouragement, kindness, and offers of assistance, and who have sent me so many supportive messages over the past few months.

Thanks to Kathleen and Jonathon, who got me on a paddleboard and fixed my (house) gutters.

To Pat, for all the movies and the Big Bowl dinners (one of these days we'll make it back to trivia!)

Thanks to Tom and Gloria for spending your Memorial Day weekend working on my house and garden, while I sat in a chair and watched.

To all of my Team in Training friends, who make me believe in the cause, and the people, even more - Sarah, for waiting around at the hospital (for way too long!) to give me a ride when I couldn't drive, to Bonnie and to Dawn, for taking me out for lunch, and to Paul, Leigh, and Jodi for making Door County that much more in my grasp.

Thanks especially to Misty, who decided she would help out by mowing my lawn all summer. And for helping me satisfy my cravings for Punch more than once.

To the breakfast bunch: Maria, Katie, Misty, and Julie - for laughter really is such good, good medicine.

To the Battles clan, for offering so much love and support from California, and for hooking me up with the awesome Dr. Pollock!

To my parents, who are always willing to drive me where I need to go, even if that might be home from Door County, and to try Indian for the first time because I'm supposed to eat turmeric.

To my sister Debra, who googled when I couldn't because I didn't want to see the statistics, who pushed me to keep asking and keep pushing at each doctor, and who worked to connect me with more doctors.

And, finally, thank you to Scott, who didn't flinch about having a girlfriend with cancer, who sat down with me to strategize about searching for second opinions doctors and how to get to them, who took on cooking for me and taking care of my house, who had to learn how jewelry fastens, and who used up his vacation time accompanying me to multitudes of appointments and surgeries.

Life is good.

Note About Parking for Friday's Celebration

Just a reminder that everyone is invited to the celebration for completing radiation.

The party is 6-10 this Friday (September 16) at Moto-i in Minneapolis.
2940 Lyndale Ave South
www.moto-i.com

There are a few parking options:
Street parking (non-metered but might be hard to find)
There is also a lot across the street behind the Jungle Theatre ($2-$3 for the night)
Underground parking lot around the corner (enter on Aldrich)

DCC Weekend - Addendum

We had to leave Door County early this morning - because I had to make it back home in time for radiation session #31. Done!

I feel like I should have made one of those construction paper chains I made in junior high to count down the last few days of school every year. Perhaps waiting for the ball to drop on New Year's will never be the same again.

Because I'm down to one. One! Just one radiation session left, and that's 7:45 tomorrow morning.

The arm is bad. Every day this weekend it got worse. It got more red, more yucky-looking, more reptilian looking. It hurts to touch it. My fingers are more numb and I keep typing Gs instead of Bs (and my last post contained the word "bike" a lot). But I'm so close, I keep telling myself. It will keep getting worse for a few days, but Dr. Cho tells me it should start improving after Friday or so.

Not sure how frequently folks read this blog (if at all), but I will post as soon as I can after tomorrow's session and meeting with Dr. Cho.

DCC - an Almost DNS then an almost DNF*

*If you routinely participate in sporting events you may be familiar with the acronyms "DNS" and "DNF." They stand for "Did Not Start" and "Did Not Finish."

This weekend was the Door County Century (DCC) Ride. I'd gotten the idea to ride it when I heard a Team in Training was training for this event and that it would be the weekend right after I finished radiation (if you've read preceding posts you'll know that I missed two days of radiation due to an equipment malfunction followed by a power outage so that I'm actually not finished until tomorrow - TOMORROW!!! YES!). It seemed extremely appropriate, since I had previously determined that getting back on my bike was going to play a vital role in the healing process and that it was just a damn good way of showing cancer how I was kicking its butt.

I connected with my friend Paul, from my TNT Tahoe 2010 team and his wife, Leigh, who were going up there with the TNT team and rode (in a car) the 300-some miles to Door County with them. Friday night we headed to one of the much-lauded Door County fish boils. Shortly before left, I started feeling sick to my stomach. I attributed it to that "so hungry I almost feel sick" thing. I kind of forgot about it after we left for the restaurant and as we watched the fish boil (it's a big production), until we sat down with our food. I did not feel right. I started feeling worse and worse. I managed to sit through the rest of dinner and even try the famous cherry pie, but as we left I decided I needed to walk around a bit to allow my stomach to figure out what was going on. Mind you, I had gotten a ride from Paul and Leigh, and we were in Fish Creek, about thirty minutes away from our hotels in Sturgeon Bay. So we walked to the marina and looked at all the amazing boats. And that's when my stomach finally decided what to do - 3 or 4 times, to be exact, right into Lake Michigan (I felt like I was in college again!).

We now headed back to Sturgeon Bay and to Target (did I mention poor Paul and Leigh were still hauling me around?) to pick up some things for me. Saltines, check! Ginger ale, check! Gatorade, oops nope! We looked at medications, but I wasn't really sure what to get and at that point started feeling woozy and had to sit down at an endcap, so we went to checkout. There was only one lane open, so I got dizzy and had to sit down again while we waited.

Ok, maybe that was all too much information again. To jump ahead, I was ill into the night and really didn't sleep until 4am. By the time I woke up the next morning, my little sickness was over but I was not exactly feeling great. I started nibbling at crackers and drinking ginger ale, and instead of checking out all the wineries and little shops of Door County, I napped half the day and spent the other half watching the National Geographic Channel.

The question was, what to do about the ride Sunday? I hadn't registered yet and was supposed to do so at 4:00 that afternoon. I can tell you, I definitely did not feel like getting on a bike. I didn't feel like even getting out of bed. A big part of me wanted to head home - my parents could come get me (they really would do that - thanks, Mom and Dad!). But what about that whole showing-cancer-who's-boss thing? The healing process? That me on the mountaintop with my bike image? I called my insurance nurseline to get their opinion - how would I feel the next day; would I be up for a long bike ride? The nurse thought I'd be quite a bit better by 4, and then back to myself by the next day if I worked on rehydrating and eating a bit more.

I did make it to registration at 4, then the TNT Inspiration Dinner at 6:30 (plain pasta, no sauce, no salad, no bread, no dessert), where I was honored, along with Paul and my other awesome survivor friends Bob and Rick as Team Heroes. I still did not feel like myself. We headed back to the hotel where we got some final tips from coach EJ, then I got my stuff ready for the next day before falling into bed.

I jumped awake as my alarm went off at 4:30am, ready to roll. I met the team downstairs for pictures, feeling like myself again. That nurse was right.

I rode with Jodi, another friend from last year's Tahoe team, who was only planning to ride 50. Going into the weekend, I'd been planning to ride 50 or 70, but Saturday I'd decided 50 was plenty. My little flu bug had made me realized that my body is going through a lot right now, no need to tax it even more. So, as we left the first rest stop, I thought I saw a sign showing go straight for 50, left for 70 and 100. Jodi turned left. And there was that competitive, stubborn part of me that didn't want to let go of 70, and I didn't object. I followed Jodi to the left.

About 8 miles later it became very clear we were on the 70/100 mile route, so we went ahead with 70 with cheerful determination. Maybe around mile 40 (remember I'd only put about 80 miles total on my road bike this summer, with my longest ride being 35) I started to tire out and trail Jodi on the hills. Somewhere in the 50s I started to slow down even more. About mile 59 I realized I had a flat. It was the rear tire, and since neither of us felt like dealing with taking the rear tire off so close to the finish, we tried pumping it back up to see what would happen.

It went flat again. We pulled into a driveway just before the sign telling us there were just seven miles left to the finish and tried to figure out what to do. There was a gash in the tire itself, not just the tube, and we could feel and hear the air coming out. If we took the time to change the tube, would it just go flat again due to the bad tire? We called race support (the beauty of a supported ride!). While we waited for someone to look at my bike, I considered sagging (for those of you not familiar, this means riding the SAG (support and gear?) wagon to the finish). I'd already ridden more miles than I'd planned. I'd gotten back on my bike. Did these last six miles matter? I've never sagged. I'd never had a DNF - definitely some not too pretty finishes, but I've always finished. Would today be my first DNF?

Nope. Support came and patched my tire, did the whole taking the wheel off and back on thing, they even gave me a new tube to replace the one that had flatted so I still had another spare. Jodi and I rode the last six miles with no new challenges, and crossed the finish line together.

My butt was happy to get off the bike, but I felt great. I felt like I could go on another ride. I'd been a bit worried about my arm, but that was pretty much a non-issue. Guess I did a pretty good job of showing cancer who's boss, huh?

A huge thanks to Jodi, Paul, Leigh, Courtney, EJ, and all the great TNT peeps who welcomed me to their group this weekend and helped me make it happen!

90% Done!

Today was treatment #29 - three more to go!

My arm is definitely getting pretty red and sore. I've stopped wearing a watch, as it's continuing to swell. My fingers also seem to be getting more numb, if that's possible (how can you measure how much you can't feel? However, I do think my typing has gotten worse - I make more typos when I hit the index finger keys). I saw Dr. Cho today and asked him, and was told that that's very possible - as the swelling gets worse, it crowds and irritates the nerves even further.

We also talked about what would happen next Tuesday. I usually have seen Dr. Cho when I'm in for radiation on Thursdays, but I'll see him again on Tuesday to look at the arm and see how it's doing. My arm will most likely get worse before it gets better - he thought about three days after the final treatment would be the worse, just in time for my celebration! Then it will heal a lot in the following two weeks, but I will have a dark arm for a long time, and that area will always be sensitive to the sun.

I made an appointment to see Dr. Cho for a one-month follow-up on October 18th. I also need to set up an appointment to see Dr. Ogilvie, although I won't have the scans for another month or even two, as all the swelling and inflammation can give false readings. I'm getting pretty anxious to have my lung CT done, though, as it's been over four months since my first one.

Tomorrow I head to Door County to ride the century ride on Sunday (while I have entertained thoughts of doing the full century (I'll miss so much scenery if I don't!), I will likely ride the 50 or 70 mile route). Even though I wasn't part of it this season, there's a Team in Training team going and they're letting me hang out with them. I'm a bit concerned about the new numbness and slight pain in my fingers and that it might impact my riding, but I haven't let it stop me yet!

We'll stay in Door County through Sunday night, then head back fairly early on Monday - I have to make my radiation session (#31!) 3:45 that afternoon!

The End of the Tunnel....

Just four sessions this week, followed by two more next week, then I'm done! I'm scheduled for my last radiation treatment on Tuesday, September 13th.

It's been a long road. To recap:

- it's malignant, no it's not, sorry yes it is malignant after all
- amputation is a possibility, amputation isn't necessary, amputation is standard of care, amputation is definitely not standard of care
- liver surgery
- three arm surgeries
- 32 radiation treatments

To celebrate this milestone, please join me in the Big Boy Lounge of Moto-I on September 16th. Bring your family and friends - everyone is welcome!

6-10 pm, Friday September 16th
Moto-i
2940 Lyndale Ave South, Minneapolis, Minnesota 55408
(612) 821-NAMA
www.moto-i.com

Radiation Update

Friday I finished my 26th radiation treatment - six more to go! I'm two treatments behind because of the equipment breakdown August 22-23, so I'm now not scheduled to finish all 32 treatments until September 13th.

My arm is now starting to show the effects of the radiation. Last weekend I noticed that it was starting to look slightly red and now, a week (5 treatments) later, it's quite red and starting to get a bit swollen. Redness, swelling, and skin thickening (yuck! Sorry if this is too much info) are all to be expected, and I'm lucky that they haven't gotten bad until now. And, really, they're not too bad, but I have a feeling that every one of these last six treatments will make a difference...

As for the other expected side effect, fatigue, it hasn't been much of an issue so far. In fact, I'm feeling great. I've been trying to run regularly, and this week I had my best run I'd for a long time. A lot of my recent struggles with running have more to do with taking way too much time off than with the radiation. I've also gotten back on my bike - Friday I rode 35 miles, and yesterday I rode 27. Next weekend I'm planning to ride at least 50 miles in Door County, Wisconsin.

I'm also back at work, as of August 25th. My manager found work for me that didn't require travel, so I started back as soon as I was able to get a return to work letter from my doc. My job is home-based, and this project is very flexible so that I can work on it on my own schedule. It's nice to be back to work - and back to a full paycheck - but I need to relearn how to balance my time!

Perspectives

More than a few times, I've been told that I seem to be "handling all of this" very well. It's made me look inside and question, am I really? How am I handling this? Should I be more upset? Am I suppressing my emotions - is there anger, tears, fear that I'm not expressing?

Back in May, when all this started, there was a lot of that. There were tears, there was anxiousness, there was anger about having to go through cancer again. Hadn't I already done my time? But, like all of us when we go through something traumatic, I moved on. I accepted what was happening and looked forward to what needed to be done.

I've read a lot of references to a cancer diagnosis being a time of transition. You look at your life, see what needs to change, and you also see what's good. I had a ton of loving friends and family that offered support, assistance with finding second opinions, lawn-mowing services, rides, and time spent laughing, forgetting about my current troubles. Summer was here, and the world was turning green and beautiful.

At the same time, I was exposed to other people in health crisis. A week after learning about my diagnosis, Scott and I met with a doctor whose waiting room was filled with kids going through cancer treatment. I saw kids - little kids - going through chemo, wearing masks to help prevent infection, kids with no hair. It helped put things in perspective.

Shortly after that, I started going to Pathways. I've mentioned Pathways a bit in previous posts. It's a place in Minneapolis that offers complementary healing services for people dealing with various health issues. In the orientation video, a woman mentioned being abandoned by friends and family after receiving a cancer diagnosis. In the group sessions I've attended since then, I've met people dealing with MS so severe they need a cane to help them walk, chronic pain so bad they can't get hugged...you get my drift. Arm cancer? Ok, I can deal with this.

I don't know why this happened to me. The total body irradiation I received almost 22 years ago is definitely suspect, but I can't be angry about that - the bone marrow transplant I received in 1989 gave me a cure, gave me life. Twenty-two years of perfect health.

All I can do is move forward and do everything I can to be healthy. And be thankful for every day and everything that I have. I've read a suggestion somewhere about keeping a "grateful" list. Every day, list five things for which you're grateful. Although I've never stuck with it, I love the idea.

Next time something happens that gets you down and you think life sucks, take a step back. Think of all the people, the things in your life that you're grateful for. Think of those folks who aren't as fortunate as you. And hopefully it will help put your life back in perspective.