I know it has been a while since I last wrote on here. I have a feeling that this is going to be an extra long post, and I apologize for that. Things happen. Life happens. And sometimes, pain happens. Physical pain, it seems, is always just a heartbeat away for me, especially when other things are falling into place. And the emotional pain that comes with the physical, well, that’s never too far away either. I have something called “childhood cancer survivorism,” and it’s never too far away.
Let me back up a little bit. The last Sunday in January, my brother Ryan took me to meet my grandparents’. One of my best friends from high school, Valerie, was getting married on February 2nd, at the zoo in Phoenix. February 2nd is a special date for Valerie, since her parents had gotten married that day, as well as her paternal grandparents. I have the best friends ever… Truly I do. My other best friend, Tammy (and her husband Curtis) agreed to come meet me in Phoenix. I don’t know how I would have done the weekend without Tammy there.
The whole weekend, I was very aware that I was in the same city in which the Thompsons lived. Rockstar Ronan. Maya. I saw Phoenix Children’s Hospital in passing, and the sight of it sobered me. That’s where Ronan was a patient, I thought. Waves of sadness washed over me, and I fought really hard to hide it, and to act happy for my friends. Yay, a wedding at the zoo! I was connected to Maya though. She is pregnant, (Poppy’s due next month, in a couple weeks!) and although I wanted to meet her and to hug her so bad, I knew in my heart that it wasn’t going to happen that weekend. I told myself I was okay with that, but to tell you the truth, I really wasn’t. Ronan and Maya are the whole reason why I am an advocate for pediatric cancer. I really had no idea it was as bad as it actually is until that night when I found Maya’s blog. The children I follow on Facebook and on blogs are dying. It is true what I’ve said before… every single day, my heart breaks. A child going home on hospice, a child trying to be brave in the face of no hope, a child becoming manic, unrecognizable, becoming skin and bones, like those pictures of Holocaust victims/survivors – all of it just brings me to my knees.
(How is it that I can turn everything and anything back around to childhood cancer?)
Anyway, I was in Phoenix for a wedding. I was a bridesmaid. Friday, February 1st, was an extremely long day. Two of the other bridesmaids, Jennifer and Sarah (Jennifer is a childhood friend of Valerie’s, and Sarah is her college roommate), came by with shirts they had made for Valerie’s bridal party. They were both really, really nice, and I liked them both instantly. We’ve been Facebook friends ever since Valerie had asked us to be in her wedding, and we’ve talked, although I have never met them before. Jennifer lives in Colorado, and Sarah lives in Alaska, though Sarah is coming back to Washington this summer. Jennifer and Sarah had errands for us to run, decorations for Val’s car to get. Tammy’s husband Curtis was such a good sport. despite the fact that he kept saying he wanted to dress like a Safari guy for the wedding.
The wedding rehearsal went off without a hitch. When Tammy and I got to the zoo, I saw Valerie, and the rest of the wedding party standing outside of the zoo’s entrance. I met Tanya, Val’s maid of honor, and I also met her grandparents. We got a tour of sorts of the zoo, and saw where the reception was going to be, and where we would be changing into our dresses. Valerie had told us the colors (tangerine and champagne – mine was tangerine) she wanted us in, and then left the choosing of the dresses to us. Val and Chris had come home to get the rest of Val’s stuff from storage during Christmas break, and I was able to give my dress to Val (after having SEVEN inches hemmed from it!) to take with her then, so I didn’t have to worry about flying with it.
After the rehearsal, we headed to an Italian restaurant for dinner, and then us girls went to the Cheesecake Factory for a little bachelorette party. Yum! After that, we headed back to the hotel, where we watched “Bridesmaids” (that movie was just as hilarious as I remembered it). And then we got our beauty sleep, early to rise the next day. Breakfast was in Val’s bridal suite, and Val’s cousin, Katie, did our nails. We got our hair and makeup done and went to the zoo. Eventually, everybody was in one place, and we got into our dresses. We had rides down to the wedding site/area. It was a Mormon ceremony, which, in my opinion, was short and sweet. I walked with Derek, Val’s younger brother. It was good. I didn’t fall or stumble once!
After the ceremony, we had pictures. We took some cool ones by the giraffes (we got to feed them treats! I don’t know why, but I have always thought that their tongues looked rough, but they’re actually just tongues, soft and wet like ours!) and on the carousel. While we were doing this, the other guests had time to enjoy the zoo. We were able to go enjoy refreshments on the patio outside of where the wedding reception was going to be. It was here that I discovered my love for coconut shrimp. Never had it before!
They introduced Val and Chris as husband and wife (they are legally changing their last name to Skorpion, since nobody really knows how to say “Robison.” It is not pronounced like it is spelled, and also because Chris has a small business called “Skorpion’s Creations” in which he makes jewelry and does photography), and the party began. Dinner was delicious… I had the chicken, and it was super duper moist and savory. The music and dancing started after dinner, and the zoo people had some animals out for us to look at and learn about. I saw a real hedgehog (which made me think of my little shih tzu Buffy and how much she loved her squeaky hedgehog in her puppy years… I have no idea where it is now) and an owl, which was cool. Thankfully, they didn’t have any live snakes out (the horrors!) but they did have a stuffed toy one out for the photo booth pictures. It was so much fun… the whole day, the whole weekend, though exhausting, was worth it, because I got to see my dear friend married! The wedding cake was cool too – it went with the zoo/animal theme. I sent a picture of it to my brother’s fiance and teased her, “Do you want a wedding cake like this?” Haha. No, she doesn’t. For one thing, she and my brother are having a rustic wine theme for theirs.
The next day, I got up early, and got dressed and packed up to fly back to Washington. I was able to go to Val and Chris’ room to watch them open their wedding presents, and then I had to say goodbye. My flight wasn’t until 4ish that afternoon, but Tammy and Curtis had to drive back to Yuma. I really, really, really appreciated them coming to help me. I honestly don’t know how I would have done it without them. It was at the airport where I felt something give inside me, the moment that one of the rods that was supposedly fused to my spine broke. I remember thinking, “Ouch, what is that?” and not being able to breathe for a minute or two because of the pain that followed. But then, it kinda faded, and although that was also the moment that my back started to itch really badly, I was able to ignore it.
The week that followed the wedding was also spent at my grandparents’, and I was not in any real pain yet, but I was still miserable because my back seemed to have a really bad case of the chicken pox. The more I itched, the more itchier it became, so I eventually just gave up on that. I also noticed (or felt) that there was a pocket of fluid at the top of my spine, and I was like, “Uh-oh, that cannot be good.” I decided to just wait and see if it went away on its own.
Phone calls to my doctor in Spokane were made. He couldn’t really do anything but consult because he was back full time at Shriner’s Hospital, but he made recommendations for orthopedic doctors in Wenatchee (thank goodness). I had x-rays. The rod on the left side of my spine was broken. Yikes. At this point, it became clear to me that I was going to have to have a 5th back surgery, and every fiber of my being was screaming, “NONONONO.” But what can you do, right? It was broken. It wasn’t going to fix itself.
The orthopedic surgeon saw me, and he told me that he was going to try to help me. Thank goodness, right? He was worried that if he just took the broken piece of rod out of my back, the other one would break also. So now he is going to cut the rod on the right side back, as a precaution. The itchiness I am experiencing is from the nerves being brushed up against. Don’t touch my nerves.
My niece Aliza turned 4 last month. The theme she wanted was Hello Kitty, and so Hello Kitty it was. Anything for this little girl, who I love with every inch of my soul. You know how much I love you? To the supermoon and back. That’s right, baby girl. I look forward to weekends because they mean time with her, and seeing her is always so gratifying. I love seeing her face light up when she sees me. I am not just bragging when I say she is super smart (all right, maybe a little). It broke my heart when the time came to go to her birthday dinner at Abby’s Pizza, and I was in so much physical pain I couldn’t go. I wanted to go so bad, for her, but I just couldn’t. When my mom and sister came back, they had pizza for me, as well as a piece of cake. Aliza had written, “I love you, Danielle” on the pizza box, which warmed my heart.
When I had radiation back in 1983, they obviously did not know what they were doing, and just radiated the spot where the tumor was, and by proxy, my lower spine. Now, because they totally messed up my spine, Seattle Children’s knows to radiate the whole spine. So if you were a patient there after 1984, you’re welcome. They knew what they had done even back then, and what could say say, but, “We’re sorry. Good luck.” This is EXACTLY why more research is needed. Kids are not miniature adults, and yet, what kind of chemotherapy drugs do they get? Adult chemo drugs, smaller doses of the poison, but still. At least some adult cancers have causes… lifestyle causes, eating habits, smoking, etc. But what is the causes of pediatric cancer?
That is what research needs to look at, developing more effective drugs/treatments with children specifically in mind. But that is a little hard when pediatric cancer gets less than 4% of annual government funding here in the good old U.S.A. It’s mind-boggling to think that cancer is the leading cause of death in children, and yet no one even cares – not unless they have somehow been touched directly by it.
There are a few things in the works to change this. We have yet to hear from President Obama on the petition for lighting the White House gold in September but we are not giving up. We will NEVER EVER GIVE UP. TheTruth365 is becoming more active. We are becoming more active. Childhood cancer needs advocates who are also activists if anything is going to change.
It’s true I’ve been forced to slow down. My body is forcing me. My 5th back surgery is scheduled for Tuesday, April 2nd.
Happy, happy, joy, joy, right? I can do this. It will be difficult, but I can do it. I’ve done it before, after all. Doing hard things is my specialty, don’t you know? :)