Living somewhere in between

Lance Armstrong described cancer as being run off the road by a truck while riding your bicycle. One minute you are pedaling along and the next you are face down in the dirt. Your ride is an epic failure. It's a great analogy. The essential truth is that good, strong people get cancer and they do all the right things to fight it, yet they still die. I don't know why I'm still walking this earth as my prognosis was "not good". I did not actually learn that fact until after I was done with treatment. I never asked and my oncologist didn't reveal that nugget of information. He said that once he met me, he figured that cancer was no match for me so why scare me unnecessarily?! There is something to be said for blissful ignorance.

The uncertainties that cancer can cause do not end with treatment. While the immediate illness may be in remission, you find that your life has changed in unexpected ways. Many cancer survivors find that they feel unsure about many aspects of their lives. This is called living with uncertainty. Some survivors put the cancer experience in the past and choose to hardly ever think about it. The uncertainties that cancer causes do not bother them very much. Others might think about cancer often and find those thoughts to be overwhelming. They may live with a lot of fears about whether the cancer will come back or how cancer will affect the future. I live somewhere in between the two, with only a vague uncertainty.

Today, I rarely think of the cancer, choosing instead to live life. Uncertainty is not part of my daily routine. However, at times, I find that I am overwhelmingly faced with a lot of uncertainty. When looking for a job, I wonder if my cancer diagnosis precedes me. It used to be that cancer walked with me everyday even though I frequently chased him off. Other times I had conversations with death, trying to convince him it was way too soon to take me. I often found myself making deals with the devil, attempting to buy more time. It used to be that the only time I didn't have cancer was when I was asleep. But since I still have to see my oncologist every three months, recurrence does rear its ugly head from time to time. There are dark moments when those fears creep in, almost paralyzing me.

But I find that it is possible to live with a vague feeling of uncertainty about what tomorrow will bring. I think that before cancer, I had fewer doubts and unknowns in my life. Having cancer has made me more aware of uncertainties, because I never expected to get cancer in the first place.

I'm back...and with a guest blogger

Hi everyone! Sorry to be out of the blog-o-sphere so long but my laptop crashed and I just saved enough moola to get it fixed [Big cheer here]. I recently passed my 2 year cancerversary [even bigger cheer]. Part of the reason I have is because of the Young Survival Coalition so I thought it appropriate to celebrate that fact with an article from a guest blogger, my friend, David Haas. A big thanks to David for his insight. A link to his blog appears at the end of the article {just click on his name}. Happy reading!

Cancer Support Groups Celebrate Life Together

Cancer support groups inspire survivors to find healthy ways to cope with their disease. The resources, advice, and personal stories survivors share with each other are both practical and encouraging. One study of breast cancer patients who attended weekly support groups showed significant improvement in survival time. This is just as likely for those with thyroid cancer, mesothelioma, skin malignancies, and other forms of cancer. Even if life expectancy does not improve, quality of life surely does. 



Many cancer patients find it hard to talk about what is happening to them. It may be awkward, uncomfortable, or painful to talk about the disease, even to family and friends. Talking to doctors and nurses can be just as hard. It may seem easier to ignore the issue, but talking can help. While some cancers are curable and most are treatable, almost all survivors face an emotional crisis. Cancer can be the scariest challenge of someone’s life. Talking with others who are going through the same thing reminds survivors that they are not alone.



There is not a “right” or “wrong” to deal with cancer. Each person copes in his or her own way. But talking about it with other survivors, or writing about it in journals or blogs, is therapeutic. Knowing that other people are listening helps survivor’s better cope with the challenges they face.



Some people find it hard to reach out to others, especially if they think they have nothing to give in return. Many cancer survivors are surprised to discover how many people want to support them. Partners, families, and friends can be disappointing sources of support because they are dealing with their own emotions. Most healthcare communities and some churches have support groups, provided by people who simply enjoy helping others. Hospice teams offer support during the last months of life.



 An online group like the American Cancer Society “Cancer Survivors Network” is a valuable resource for cancer survivors. They celebrate life together by supporting each other and telling their stories. Discussion boards are a good place to meet other survivors and build friendships. Internet chat and instant messaging allow for real-time conversations. And cancer support blogs offer useful information and insight.



Cancer patients face similar fears and uncertainties. Support groups are important whether someone has treatable breast cancer, an unfavorable pancreatic cancer prognosis, or a short mesothelioma life expectancy and prognosis. Talking about cancer with people who understand is priceless. Support networks give survivors a sense of belonging and a safe place to vent. Group involvement is known to reduce stress and improve health, for a better quality of life. And that is something every cancer survivor wants and needs. Other online resources can be located at:

Inspire.com
Caring Bridge


By: David Haas

Port removal

I recently had my bard port removed as I am done with cancer treatment (yes, a collective cheer is much appreciated). For those who aren't familiar, a port (or portacath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". The port is usually inserted in the upper chest, just below the clavicle or collar bone.
A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.
They told me that it usually hurts more when its implanted versus when its removed. I didn't find that to be true. I was in more pain than anticipated (thank god for painkillers!) I was told that mine was starting to fray so it was a good thing it came out. I had debated whether or not to have it removed because, what if (god forbid) I needed it again?! But then I decided to think positive - I will never need it again!
Now the question becomes, due to the aggressiveness of the cancer, should I have the other breast removed? I originally wanted them to take both but surgery is hard on the body. And of course it would have to be done when roller derby season is over!

A blue star, cancer news & the ten of cups

OK, so I know it's been a while since I last wrote. I've been incredibly busy with Community Green, getting a tattoo with my teammates (that's my blue star on my left wrist), looking for a "real" job, roller derby activities, etc...
On a quiet Thursday evening in May, myself and 5 teammates went for blue star tattoos. You see, in 'Paign-land, a "blue" star is the equivalent of a "gold" star. We award each other blue stars for a job well done. We had decided to go for the tattoos after our first win. I wanted mine to be where I could always see it and be reminded that I am a derby girl. When I'm ancient and tottering around the nursing home (which Hannah likes to remind me that she will be choosing) I will be regaling them all with stories of my roller derby days! Something to look forward to, huh?!
The cancer news is not my news, rather it is a status update on a couple of friends. They recently learned that their cancer has metastasized. Such is the double-edged sword of a breast cancer support group. Those that you've gotten to know and grown to love don't always get better, sometimes there is a downturn. That's why I originally avoided attending a support group. I had lost some "Chemo Comrades" in my year of treatment and was afraid to have that happen again. The pain and heartache of such loss was almost too much for me to handle and it just kept happening. Every time you lose a "comrade" you realize that it can happen to you while knowing that because it happened to them, your odds are better. [This is where that old catholic guilt really kicks in!] Before cancer, I never cried in public (exception: funeral/memorial services). Since cancer, I cried many times in the elevator at Christie Clinic on my way out of treatment. Unfortunately, most people didn't know how to react to the "crazy, almost bald-headed lady" crying in the elevator (oh, to have had a video camera!). But it's always good to be with people who understand exactly what you are going through, so much so that sometimes you don't even have to say it. What I wouldn't give to leave the emotional roller coaster of cancer behind. Actually, these days the cancer is no longer that monkey on my back and I sometimes even "forget" that I have it! It used to be that I only forgot about it when I was sleeping.
What is most interesting is how people deal with such news. Some are galvanized into action to fight for a cure while others retreat to spend time with those most important to them. I am most surprised at my own reaction, as I would have thought that I would've rushed headlong into the fight and devoted all my time and energy to the cause. But I chose to focus on me and mine instead. Sometimes I feel guilty for not doing more in the fight against breast cancer. It has been 21 months since my diagnosis; I have come to the conclusion that the subject still hits too close to home and the uncertainty of recurrence too much to bear.
The lesson I have learned from this journey is reflected in today's tarot card, the Ten of Cups. The Ten of Cups refers to cycles completed, journeys finished and lives well lived in the company of others. Serenity and peace are in the air, and for a moment you can simply forget about all of the material troubles of the world around you. Nothing material matters here, just the eternal happiness that has been earned through trials and obstacles. This success is not a fleeting or temporary one, but a lasting peace and harmony that can truly be enjoyed. There are no regrets over the past, no concerns for the future, so you can live in the moment and seize the day. The only caution of the Ten of Cups is to not squander these precious times that have been given to you. Don't take your happiness for granted because it can slip away. Don't let this time stagnate, rather keep it in a constant state of growth and rejuvenation. Don't go looking for problems, just sit back and enjoy what you have. The greatest power in the world is that of love, and through love we can get a glimpse of what is truly great.

Still having fun

Last weekend the Twin City Derby Girls held our first bout of the season. My team, the 'Paign beat the McLean County Missfits 159 - 53. And I got to jam! Ok, so I was a bit of a spaz out there but we were so far ahead that I couldn't screw it up. I even managed to score some points! I enjoyed myself more than I can even explain. I played softball for many years and loved it but the rush I get from derby is so much greater. I think it is because of the cancer. All emotions are heightened now. Everything I get to do is a bonus. Fear doesn't stop me; I'll try anything! I "modeled" in the Derby Fashion Show and I continue to play roller derby. I started skating to beat cancer and continue to skate to keep the cancer at bay. The derby part is the bonus. I think the biggest bonus is my derby family. I don't think I could have made this journey without them. They made me strong and keep me grounded.

The resurgence of the extreme sports craze has helped roller derby make a comeback. Personally, I was tired of the "gym routine" and wanted something more exciting. The campy novelty of the sport was too much to ignore. Our derby names, boutfits and attitudes are all in fun. After all, if you can't make fun of yourself, who can you make fun of? Although the workouts are intense, it's still fun. Racing around the rink may look easy but it's not. It takes a lot of strength and stamina just to keep going. But it is the best workout you will find. Roller derby is a lot like life; it will knock you down but you get back up and keep on rollin!

A lot of the 'Paign decided to get tattoos once we scored our first "W". And tonight's the night. I think most of us are going to get blue stars, since blue is our color. I think I'm getting mine on my left wrist. I want to be able to see it at all times so I will always remember that I am a derby girl. Even when I'm 90!

Vitamin D deficiency? What the hell?

I saw my oncologist recently for my usual quarterly check-up. A week later I received a call from his office and they were in a panic. Seems my Vitamin D level was extremely low but I couldn't help but wonder why it was such a big deal? I didn't realize what all problems this could cause. Some health problems that Vitamin D deficiency can cause include heart disease, chronic pain, Fibromyalgia, hypertension, arthritis, depression, inflammatory bowel disease, obesity, PMS, Crohns Disease, cancer, MS and other autoimmune diseases. They wanted me to begin taking a high dose of Vitamin D immediately. Apparently vitamin D is of utmost importance for your body because its role is to help your body use the calcium and phosphorus from your food. It also regulates normal cellular differentiation thus preventing cancer and helps insulin secretion. Vitamin D is very important for the body, regardless of age or sex, but here is something about vitamin D deficiency symptoms in women - it is suggested that vitamin D is very important when it comes to cancer prevention in women; the types of cancers we’re referring to are breast cancer, bladder cancer, ovarian cancer and colon cancer.

One of the most common symptoms of a vitamin D deficiency is fatigue. This doesn’t just mean that you have to take naps throughout the day or that you are sometimes tired and have a hard time waking up in the morning. Instead, vitamin D deficiency fatigue is a near-constant feeling that you might fall asleep or are too weak to do everything from brush your teeth to even walk to bathroom. Folks with vitamin D deficiency fatigue have a hard time not only going to work but also doing such things like driving cars or talking to friends and family members. This symptom is one of the most commonly listed and one of the most debilitating. No matter how much a person sleeps, they may not be able to feel energized. A person’s professional and personal life is affected due to the vitamin D deficiency fatigue. I've been tired and feeling out of sorts lately but I thought it was just overdoing it trying to get Community Green rolling.

Also, pain in the bones or muscles, as well as poor concentration/memory and restless sleep are other indications of possible deficiency. [I have noticed a lot more leg and foot cramps lately and I'm lucky if I remember to get dressed in the morning!] Lastly, a more serious symptom of vitamin D deficiency is that one’s bones have become more fragile. This means that a simple trip could result in fractured or broken leg. This can be quite serious because fragile bones take long time and is hard to heal. [Great, I'd better be careful at derby practice!]

Vitamin D is found in many dietary sources such as fish, eggs, fortified milk, and cod liver oil. The sun also contributes significantly to the daily production of vitamin D, and as little as 10 minutes of exposure is thought to be enough to prevent deficiencies. Getting enough Vitamin D is important to good health!

Introducing Community Green

Hi all, I know that I have been uncharacteristically quiet lately but I'm back! Sorry to be out of touch for so long but I've been busy...and I mean really busy. I, along with my sister, started a nonprofit called Community Green. That's Bert in the picture there, leaning on the counter we built by reusing an old door, some bead board, wood scraps and leftover paint. We only had to purchase 2 x 4's and some braces. Talk about reusing and repurposing! Community Green will help the citizens of Champaign County improve their lives through greener living. Here’s how we'll do it:

* Community Green will conduct energy audits, including for low-income residents of Champaign County. Our trained experts will check and measure energy use, pointing out ways to improve comfort while reducing utility costs.

* We will be able to help “Green Up” new construction with practical energy-saving information and connections to experienced contractors.

* Housing advocacy services to assist community members in obtaining and/or maintaining stable, energy-efficient housing.

* Community Green will teach and communicate… with outreach programs to community groups.

And we are not just talk! Community Green is all about putting energy-saving ideas into action. So we won’t just give advice, we will follow up with homeowners and builders and make sure the job gets done. “Conservation” does NOT mean “sacrifice.” Making smarter choices in how we use energy can make our homes more comfortable and our lives easier. At the same time, getting energy smarter means saving money, breathing cleaner air, fighting global warming, and helping our country become less dependent on foreign energy suppliers. There was an article in today's paper. You can access it at The News-Gazette online, in the business section.

Today was our "Grand Opening" for the Resale Shop. The revenue from the shop will help to support services. Most of the items in the shop were donated by our family and friends. Their generosity and support helped us to get this venture off the ground. We met a lot of new people, picked up some donations and even gained some consumers needing our services. All in all, a most awesome day! At this time, we are an all volunteer organization. We do accept donations and even offer pick-up service for donations on Tuesdays and Saturdays. Our hours are Thursday 1 pm - 6 pm, Friday and Saturday 10 am - 6 pm and Sunday Noon - 5 pm. So, if you need a place to send your leftover yard sale items, think Community Green! Also, should you be looking for a volunteer opportunity...again, think Community Green! The Resale Shop is located at 2200A E. University Ave. (next to Casey's). Come visit us soon and Go Green!