LIVESTRONG

So if you hadn’t already heard my screams of elation, I wanted to let the blogosphere know that I am cancer free and done with treatment! My last radiation treatment was on October 10, and I am so incredibly excited to start this new chapter of my life called survivorship. I, of course, ordered a special t-shirt for the occasion.

Image

I’m not going to lie, I still have my emotional and physical struggles. The rest of my life is just beginning and its going to be a long journey. However, I’m happy to report that I’m now going into the office most days and am doing pretty well. I also started the LIVESTRONG at the YMCA program, which provides a free gym membership to cancer survivors for three months, along with twice a week small-group training sessions with other cancer survivors under the direction of oncology-certified personal trainers. The program acts as a duel-purpose work out and support group. Which brings me to the topic of this blog entry: LIVESTRONG.

As a self-respecting, cancer-surviving Austin-ite, I can’t pass up the opportunity to blog about the LIVESTRONG Challenge that took place in Austin this weekend. I wasn’t able to participate since I’m still in recovery, but it’s certainly something to celebrate and aspire to. Challenge participants choose between 18-mile, 65-mile and 100-mile bike courses in order to raise money for LIVESTRONG (a.k.a Lance Armstrong Foundation.) LIVESTRONG is an Austin-based nonprofit organization that raises awareness of cancer and addresses issues facing cancer fighters and survivors.  4,300 hundred cyclists participated in this year’s Challenge, creating the largest cycling event in Austin history, and raising $4 million for LIVESTRONG.  An amazing feat, right?

Sadly, what is making more headlines is that LIVESTRONG founder and seven-time Tour de France winner Lance Armstrong stepped down as chairman of the foundation last week due to the findings of the U.S. Anti-Doping Agency’s investigation into allegations that Armstrong doped during his cycling career. Soon after Lance Armstrong’s resignation, many of his sponsors also discontinued their relationship with him. Thankfully, most sponsors – including Nike—maintain their support of LIVESTRONG. Sadly, some donors have decided they want their money back, feeling they were duped by Lance Armstrong.

I was lucky to have an opportunity to talk with CNN on this topic, which can be viewed at http://www.cnn.com/video/#/video/us/2012/10/21/blackwell-lance-livestrong.cnn. None of my sound bites were used, but my fellow Team Survivor members did a wonderful job expressing the feelings of many people in the cancer community.

Image

All I can really do is explain to you my experiences with LIVESTRONG. LIVESTRONG is probably the organization that has been the best at helping me navigate through the cancer waters. The people benefiting from the foundation are people like me. Cancer fighters and survivors and their families. Not Lance Armstrong. He didn’t even take a salary for his position.

The foremost purpose LIVESTRONG has served for me is as a central location of information. I cannot express to you how many organizations serve cancer patients. It is exhausting and impossible to sift through absolutely all of them. What LIVESTRONG does is provide information to help navigate you to the resources that will help you, an individual in a very specific and unique situation. The issues that affect me as a 25-year-old Hodgkin’s survivor who was just diagnosed this year, are not going to be the same as what a 45-year-old breast cancer survivor, 10 years out of treatment faces. LIVESTRONG gets that. They do the leg work for us, so we don’t have to. They help us save time, money and energy, so we can use those resources to beat this disease.

Like I discussed in my entry, IVF with Cancer, one of my first encounters with LIVESTRONG is when they navigated me to their FertileHope program that provides cancer patients free or low-cost IVF, egg and sperm banking options. They provide funding to partner clinics to make these programs possible. They also direct patients to other clinics and organizations that offer similar services. They give us something that is priceless: options. I opted to stay with my own healthcare system, but my friend Victoria would never have found her clinic if it hadn’t been for the LIVESTRONG navigation system. Since then, they have helped me find support groups, and most recently the LIVESTRONG at the YMCA program.

Lance Armstrong’s story still remains an inspiration to me. He put a face to young adult cancer for the world. He showed the world that a young, vibrant athlete was just as susceptible to this illness as anyone else. And he showed me that there is more to life as a cancer survivor than just surviving. That life after cancer does not have to be any worse. Hell, it can even be better. Cancer survivors can go on to achieve and even exceed their dreams. Or even completely change them. Not only did he do that, but he used his fame to create a very effective foundation to advocate for cancer patients and survivors. LIVESTRONG brought the WHOLE cancer community together in a way that it wasn’t before. He didn’t form an organization just for the testicular cancer community. He formed an organization for the ENTIRE cancer community. All four of us that participated in the CNN interview had different forms of cancer: colon, breast, cervical and Hodgkin’s. Two of the women are long-term cancer survivors who had many more challenges in their own cancer journey because they did not have LIVESTRONG when they were going through similar issues. As I’ve said many times, I’m incredibly blessed for a multitude of reasons, but one of them is because I live in a day and age that organizations like LIVESTRONG exist. Because people like Lance were vocal about their experiences and did something about it, we have more options and more resources to address cancer-related issues like infertility, depression, and decreased fitness, just to name a few.

One of the reasons I blog and volunteer for things like CNN interviews is because of the example set for me by people like Lance Armstrong. You never know whose life you might impact just by being vocal about your story and putting yourself out there to the extent that you’re comfortable with. As Victoria says, just saying “I’m 25 and I received a cancer diagnosis,” is powerful. Because I’m vocal about my experience, my friends have become more aware of their own health. My husband has had moles removed that turned out to be pre-cancerous. I’m able to help and learn from others who have similar challenges, and vice versa. At the end of the day, what I’ve learned is that its not just about surviving, it’s about living and being happy and achieving your dreams and making new ones and to reach out to and accept help from other human beings along the way.

That’s what it means to LIVESTRONG.

Radiation

The road to radiation seemed… to… take … for… ever….. Seriously. From the very first meeting I had with the oncologist, radiation seemed to be this very mysterious process that she didn’t really want to discuss at length. I think this was for a variety (of what I’m sure were very good) reasons. As a newly diagnosed cancer patient you are bombarded with information. You have all these you have to do to get ready for treatment.

Biopsy… check… biopsy again… check… port placement… check… egg retrieval… check… etc. etc.

And I think she wanted me to stay focused on the step at hand and not the step 3,000+ steps further down the road. Totally understandable. But I really wanted to plan plan plan. I really had no idea what to expect from it. I also didn’t know very many people who had lymphoma. I researched on forums but everyone seemed to have different experiences and very few people had been diagnosed as early as I had. The one Hodgkin-survivor I knew had it nine years ago, and she only underwent chemotherapy. So I had it in my head that maybe if my scans were really awesome I wouldn’t have to have radiation. Unfortunately that was not the case. Which is why people always say not to compare your situation to anyone else’s situation, every situation is different, medical recommendations change all the time, yada yada yada.

On August 16 I had my last chemo treatment, and on September 6 I found out that my PT Scan was “pet negative,” meaning that the cancer was no longer detectible. I was totally stoked thinking, “Woohoo, I’m cured! No radiation for me. Right?!” In my situation that was not the case. Apparently with the form of Hodgkin’s that I have, Nodular Sclerosing, there will always be a residual mass left over. The purpose of the radiation in my case is to make sure that within that mass there are no minute traces of cancer flying under the radar.

So I started another check list of things I needed to do to get ready for radiation. The first step was to meet my radiation oncologist the following week. My main oncology facility is not set up for radiation at this point, so I was referred to another center in my area. I met with the new doctor and had the whole radiation process demystified at long last. We talked at length for more than an hour. I’ve never had a doctor spend that much time with me one-on-one, and it was very refreshing. During our heart-to-heart, I found out that I would have 12 sessions of radiation that last about 5 minutes each.  I had been anticipating upward of 30 sessions, so this was really great news. My radiation would take place daily on weekdays and would take just over two weeks to complete.

Again, I was stoked,”Woohoo, I’ll be done in two weeks!” Again, it didn’t quite work out that way. She wanted me to wait a full six-weeks after chemotherapy to begin radiation, so I wasn’t able to begin radiation for about two more weeks after that appointment.

In the mean time, I went through a series of other steps. I got tattoos. That’s right. I’m now all “tatted” up. I have six or seven now. In fact, you can see two of them in this photo:

Image

Yeah… totally anticlimactic, right?

So basically I had to go for a “positioning scan” the following week on September 18. Which meant I had to have an MRI. For anyone fortunate enough not to know what that means, they put you in a machine/tube like this and take photos of your “innards” while it makes whirling and clicking sounds.

Image

Using the images, a nice nurse tattooed several freckles onto my skin in strategic locations. I have three down the center of my chest, two on my shoulders and two on my sides. I think there might be a few more, but they’re seriously easy to lose track of … they are that small.

The tattoos are used to keep my body aligned so that the radiation is hitting exactly where it needs to. People who had Hodgkin’s 20, 30, 40 years ago received much higher doses of radiation and chemo, which led to many of them having secondary cancers, fertility issues, etc. later on in life. They have significantly reduced these doses for my generation in order to compromise as little tissue as possible. The tattoos help them do that.

I also had a mask fitting during the same appointment. The nurse put soft plastic on my face and then let it harden, almost like having a clay mask done at a spa. It kind of feels like having a tennis racket help up to your face, except its extremely form fitted.

Image

I went into my first radiation appointment on September 25 ready for battle in my Team Laura shirt.

Image

I, of course, had to immediately disrobe. But c’est la vie.

During radiation the mask is bolted to a table so that my head doesn’t move. This serves the purpose of keeping me aligned properly during radiation, and also holds my chin up at an unnatural angle so that less tissue is in the radiation field.

Image

I will admit, the mask was an issue in the first session. I was trooper up until the very end and started feeling really claustrophobic. The first session they had to do preliminary x-rays to make sure everything was where it was supposed to be, the tattoos were done properly, etc. I felt like I was in the mask for half-an-hour. I even got another tattoo in the process. My guess is that it was actually less than that, but it seemed to take forever.

Luckily all of the subsequent session have been much quicker. I’m usually in the doctors office for less than 30 minutes. I’m only in the mask for about five of those minutes.

I often think about how rough it is for kids to go through these treatments. As hard as it is for a 25-year-old to do it, I can’t imagine what its like for a toddler or small child. I really have so much respect for them. Whats really cool is that the child oncologist at my center does really cool things with their masks. He makes them look like the super heroes they are. Or he’ll make them become cartoon characters. Whatever makes them more comfortable and happier.

Image

I really respect the fact that he paints them himself and doesn’t get an intern to do it. I think it really speaks volumes about who he is as a doctor and person.

I had my ninth radiation session earlier today and will be done by the middle of next week! Which means I will be done with treatment and am free and clear until my next PT scan in December. I will, at some point, have to have one last surgery to have my port taken out. But again, we haven’t gotten there yet and I’m not sure when it’ll happen.

Right now, all that matters is that I can feel a party in my future and I’m ready to celebrate with those I love!