Treatment Update: Hitting the wall…
September 11th, 2009 | by Emily | See all Treatment Update entries | 11 Comments
It’s been a while since our last update. Sorry for that; the summer and all its craziness has made time move all too fast.Of late, we’ve begun to feel like we are hitting the wall in terms of this whole treatment thing. ”Hitting the wall” is an expression that marathoners know all too well. In physiological terms, it is the point in the race when your body runs out of glycogen (the body’s stored form of energy) and the body must switch from aerobic metabolism to anaerobic metabolism. Not an efficient switch for someone trying to crank through the last few miles of a race. In a physical sense, “hitting the wall” in a marathon is the point in the race, usually around miles 18-20, when you begin to feel like your legs are filled with lead and your sleek, light racing shoes turn into concrete blocks. You feel like you are running through quick sand and that you are pulling a semi-truck. Mentally, your demons begin to fill your head with doubts about your ability to take your next step let alone to reach the finishing line feeling strong. This is where the marathon becomes a supreme mental challenge. This is the point at which you must believe in yourself, your training, and the countless hours you’ve dedicated toward getting to this stage.I feel like we have reached that point in Maddie’s treatment. We are only 5 months away from the finish line. If we compare that to a marathon, we would be at about mile 21 or 22, the perfect place to “hit the wall”. A couple of months ago, Maddie and I were driving in the car and out of the blue she said to me,”Will I be asleep when they take it out?” As several seconds of quiet ticked away, I quickly tried to figure out what “it” was. Then, it hit me; she was wondering about her port. Would she be asleep when her port was removed from her chest? I replied,”Yes, you’ll probably be given some propofol, so you go to sleep and it will be removed while you are asleep.” She thought about my reply for a moment and then said,”But how will they take it out if they use it to make me go to sleep?” Not having much OR experience, I wasn’t entirely sure, but I guessed, “I bet they will put an IV into your arm while you’re asleep and then take the port out.” She thought about that for a moment and said,”OK.” Then a moment later, I heard these deep, sorrowful sobs from the backseat. It wasn’t the cry of a child who had just injured herself; rather it was a mournful sob that you might expect from an adult. It certainly got my attention causing me to nearly drive off the road. I asked her what was wrong and she replied,”I just don’t want to do this anymore.” Flustered, I wasn’t sure how to respond. Yes, I wanted to sob, too, and tell her I didn’t want to do this anymore either. And I did. I told her that I was tired of it, too, and given the choice I would rather not do this anymore. But then we talked about how we don’t have a choice. I told her that the medicine, blood draws and all the procedures are ultimately going to her better and get rid of all the cancer. All this was information she already knew, but I think it was helpful for her to be able to express her frustration and have it acknowledged. Brad and I have forced Maddie (for better or worse) to incorporate her treatment into our regular daily routine. We tend to not dwell on how much it sucks, because we don’t see that attitude as helping us through this long journey. But every once in a while, just like I did at mile 21 of the NYC marathon in 2004, it’s OK to WANT to be done. What is also important and most difficult, is that during those low, dark moments, you pick yourself up and will yourself to the finish line. I made it to the finish of that NYC marathon, not in a personal best time, but with the satisfaction of working through the challenges both physical and mental and persevering to the end.Our dark moments are not plentiful. When they do come, we face our fears head on, recognize how far we’ve come, and believe that we can do it. The effect of Maddie’s treatment is hardly visibly physically; she has a full head of very curly brown hair, enough energy to keep Brad and me running, and has just started kindergarten. Like a marathon, however, this journey has become a supreme mental challenge. We now have our eyes on the prize – January of 2010 and Maddie’s finish line.
September 11th, 2009 at 12:02 pm (#)
Brad & Emily,
My heart goes out to you and Maddie. She’s been such a trooper. I’ll be keeping her in my prayers. I know that when January 2010 rolls around it will be cause for a big celebration.
Donna (Dustin’s mom)
September 11th, 2009 at 12:30 pm (#)
Brad, Emily, and Maddie,
Stupid walls. You all have shown over the past 2 years the ability to face them all head on. It is a bit harder when the finish line is somewhere in sight and one pops up. We can clearly relate – Heather had quite a few walls during all of her treatments. Persevere. You will be on the other side of this soon and will be able to look back with some perspective. Getting through yet another difficult time will be helpful in the long run, making all of you even stronger. Our radiation oncologist told us that we would come to appreciate the Hodgkins disease and that it would change our lives for the better. I knew him well, so I didn’t punch him at the time. Time has passed now, and of course, he was right. Persevere.
(Maddie’s picture still sits over my shoulder staring at me every day!)
Dr. Dan, Heather, and Jordan
September 11th, 2009 at 12:33 pm (#)
Emily,
This is a great analogy. All three of you must be SO done with Maddie’s marathon. From my distance I continue to be terribly impressed with all three of you, and excited to see the end in sight. And it makes me so happy to hear about Maddie’s energy and think of her in Kindergarten.
Hang in there!
With love,
Lucy
September 11th, 2009 at 12:45 pm (#)
Emily, I too am a runner and mother………..plus, a friend to both your mom and Penny Voss. I have prayed and thought about your family many, many times.
Know that we are sending positives your way and in addtion, know that THIS finish line is THE MOST IMPORTANT one of your life. The tape is not yellow, but golden!
I will rejoice with you when January 2010 rolls around. My best to you and your family. FYI: Maddie is one amazing little girl, but you already know that!
September 11th, 2009 at 1:26 pm (#)
Hi Brad, Emily, and Maddie,
I read this most recent post and immediately realized that I have to call you! I haven’t talked to you, or seen you, in a ridiculously long time, and I miss you all very much! For some reason my call would not go through…Anyway, I’m up in Vermont at Green Mountain College, and would love to see you all at some point in the near future, if possible. I’m so happy to hear that Maddie’s treatment is almost finished, even though this push to the end may be a difficult stretch. Her picture is hanging on the wall of my dorm room, and I think about all of you every day. Hope to see you soon.
Love,
Angela
September 11th, 2009 at 5:40 pm (#)
Dear Emily,
You so eloquently share your trials and tribulations with all of us, in an open forum. Thank you, for I think it must make all of us readers realize how fortunate we are.
My grand-daughter, Eliza, is about the same age as Maddie.
That is partly why we wanted to be involved in TWO TRIALS.
But, the biggest reason is how much Billy and I admired your constitution, Emily. You are an amazing woman. An amazing mother. You derserve all the support and help that you get. They say God helps those who help themselves. Well, you and Brad are a prime example of that saying.
Years from now, Maddie will look back on this and it will make her love both of you even more.
Hang in there. You are doing everything right. January is just around the corner. Can you smell the barn?
TAKE CARE and give Maddie a hug.
Warmly, your running friend,
Kathy P.
North Berwick, Maine
September 11th, 2009 at 7:53 pm (#)
As always, I appreciate your strength, honesty and perspective. Yup, it really does…suck…that you have had to go through this. But, you did, you do, and you will – because you have to…but you three endure it with a dignity and grace that I could only hope to have. I know not everyday is full of grace, but, your victory will be sweeter for the bad days. I so look forward to seeing you all in October – I am hoping Maddie will steal the show at our wedding (I never liked being the center of attention anyway).
September 13th, 2009 at 7:54 am (#)
Thank you for sharing such a private, powerful moment, Emily. I was so moved to read how you were able to let Maddie have a moment of ‘not wanting to do it anymore.’ In my experience, being really heard and understood in a moment like that can be invaluable. And afterward, I can get back into the hard work with even more strength than before. Scott, Margaret and I send you all lots of love. I think we’ll see you soon at Margaret’s wedding! Take care, Sue
September 13th, 2009 at 1:27 pm (#)
Great story and understandable. Maddie clearly comes from a good gene pool as do both her parents. Run thru it guys.
The goal is near and worth the effort. Someday we can share lessons learned, in person.
Best to all from Ann Arbor.
chuck and tracey
September 15th, 2009 at 10:05 am (#)
They say that attitude makes all the difference and clearly you have embraced that philosophy. So glad that the finish line is in sight!! I am a marathon runner and I always say “the wall is only there if you see it.” I think I read something like that in one of Hal Higdon’s books. I have not yet hit the wall at any of my 8 marathons, because I refuse to see it. I hope it gets out of your way soon!!! All the best!
December 21st, 2009 at 12:07 pm (#)
hii .!
im from the bath middle school in the red house .
when you came down and explained everything to us .
im glad to hear that shes still getting through this .
it must be a pain (: actually , im in morse high school now .
which means its been a while .
i was glad that i was one of the students to pick you and maddie up . soo , basicly i saw you first !
i miss you guys . maybe you should come to morse sometime and tell us how she is doing . an you should post up more recent pictures . (: christmas is soon . (: ! arent you exited ! tell maddie i said merry christmas .
i hope all goes well <3
best wishes ; and merry christmas ,
destinee barter <3333