Tuesday, March 26, 2013

Shame on me

I am ashamed of the fact that I have neglected this blog for so long. When a person has a "terminal" illness or chronic disease, it is terrible to not keep people updated on how I am doing. I kind of lost myself emotionally for awhile and got tired of having cancer stake any validity in my life. I buried myself in my studies for Early Childhood Education and received my BA on February 25,2013. I struggled with people not understanding my need to keep myself mentally focused elsewhere to keep from losing my sanity. Now that I have finished my degree, I have been brainstorming other productive ways to keep my mind in a positive place. I have a plan and it is one where I can make the most difference and leave my footprint in this life.This blog is one of the things that I feel the need to focus more attention on. Especially when it was pointed out to me that my "story" may give others hope and encourage them. This seems especially important to me as I am coming up on the 4-year anniversary of my diagnosis. I sincerely apologize for my ignorance in not keeping people in the loop.

Over the past few months, I have been challenged with a few scary times where doctors thought that it might have been the end of the road for me. I pushed forward, remained positive, and eventually heard good news that things were not as they seemed.  Currently, I am still in active treatment and my cancer remains "stable". After four years, treatment has just become an area of my life that I have accepted. It allows me to remain alive and spend more time with my three beautiful children. I am thankful and blessed for that. I have also struggled with feeling overwhelmed by the expectations that often get placed on me because I appear to have so much strength. I push myself through everything, but sometimes it would be nice for some individuals to acknowledge that I do indeed have cancer and that I am not superwoman. Just because I don't complain, does not mean that I don't have bad days. I hate that the person I am today is no where near the person that I was, but I still strive to be her. 

Wednesday, June 20, 2012

Back to treatment

I went back to treatment this morning and it was early (8:30am). First, I had my final appointment with my current Oncologist and we discussed that my cancer is stable and progression free with my current treatment. The plan is to continue with the current "cocktail" and if any significant changes occur in my blood work and CEA, I will have another CT scan. I took my two sons to treatment with me today as they begged to go with me and added some tears in the mix. They were really well behaved and the nurses gave them the royal treatment. :)

I'm feeling alright. The first couple of hours home I was exhausted and a bit nauseated, but I managed to force myself to eat a bowl of lucky charms. It actually helped me to feel a little bit better and I was able to tidy up the house a little bit this evening. Amazingly, I also felt up to doing a proper update to this blog and attending a webinar put on by the Colon Cancer Alliance (CCA) and FightColorectalCancer.org. The webinar was on advances in the treatment of Colon and Rectal Cancer, more specifically advanced stage disease. The speaker was Dr. Axel Grothey who is a Professor of Oncology at the Mayo Clinic. He was very knowledgeable and did a fantastic overview of current treatment options and options in the foreseeable future. It gives me hope to see all the current research and advances that are being made in colon cancer. I was amazed to learn that I have far surpassed the median survival rate for colon cancer.

However, when he was discussing the use of Oxaliplatin, he stated that no patient should have more than 8 cycles of this drug because of neuropathy. He stated that the neuropathy that is related to chemotherapy and specifically the use of Oxaliplatin does not just go away over time as once thought and is most likely permanent. Sadly, I have received at least twice the recommended amount of cycles (12 or more) of Oxaliplatin. I have neuropathy in my feet and legs up to my knees and in my hands. If anything, it has gotten worse over time. It is a drug that I can go back to if the need arises (it's still a viable treatment option for me). After discussing it with my Oncologist, it would be a matter of how far I was willing to go and quality of life being a factor. The neuropathy could potentially get so bad that you wouldn't be able to walk or perhaps even be able to do necessary bodily functions. Sadly, this is a very real issue. Thankfully it is not one that I need to address at the moment, but it is something that I need to potentially think about.

The webinar had a lot of great information and gave me a lot of hope for the future. I've read quite a few stories of people like me who have survived upwards of 10 years on active treatment. It all comes down to quality of life and how far you are willing to go to survive. For me, it is selfless, my children need me and no matter how difficult it gets at times, I am willing to do what it takes for them to have a mommy. When I have special moments with my children (and there were many today) and I see how much they love and depend on me, it makes it all worth while. I consider myself fortunate to share in every moment.

So, I've got my pump on until Friday afternoon. I'll try to make an effort to update through this cycle. I realize how encouraging a story like mine can be to someone who has just been diagnosed. A diagnosis today doesn't have the same outcome that it did even just 10 years ago. If I do anything through my blog, I hope to give even just one person "hope". So much of this battle is mental and staying positive.

Until next time,

Tuesday, June 19, 2012

Still Hanging in here....

I'm still here, but I've been feeling pretty crappy lately. I just finished my 14 day round of antibiotics, but I still don't feel well. I feel achy and after being on the same pain medication for three years, they just don't seem to be doing the job anymore. I know that the constant days of rain are affecting my mood. I'm longing for sunshine to keep me sane.

Tomorrow, I go back to treatment after taking a break to get over a pretty serious sinus infection. It will be the last appointment that I will have with my current Oncologist. He is taking a position in another part of the country, so I have been forced to look for a new doctor. Fortunately, I am really excited about my choice in a new doctor. He did his residency and fellowship at the Mayo clinic here in Minnesota. So, his qualifications  are something to be a little excited about. I was scared of this change, but now I am very hopeful.

The kids have been out of school for almost a month now and I'm enjoying spending more time with them this summer. No matter what happens in my life, I can always count on my three little munchkins putting a smile on my face. There is a scurry of excitement over my youngest child's upcoming 4th birthday. It's bittersweet to watch him learn and grow. He was only a couple of days past his first birthday when our lives changed forever. I am feeling so very fortunate to be here to celebrate another birthday with him. Every day is a blessing.

Life is busy with the kids, working on my BA in education, and keeping up with all the housework. I am working on being a little more consistent with this blog, but I find I always update on Facebook more frequently. I'm working on it.

As always, thank you for your continuous thoughts and prayers. 


Thursday, April 26, 2012

Getting a "mini-break"

I was supposed to get treatment yesterday, but after getting a message to my doctor, he agreed that I should hold off treatment for this cycle. So, I'm getting a little "mini-break" until May 9th. I'm currently on antibiotics to fight off an infection after having a tooth extracted last week. Many people don't talk about a lot of the devastating side effects of chemotherapy. Often cancer patients and the medical community only talk about nausea and hair loss. What they don't tell you is that there are a ton of other side effects. Two that I am dealing with right now are devastating to me.

The first is damage to my vocal cords. From the time I was very young until I was in my mid-twenties, I was in a variety of dancing-singing ensembles, choirs, vocal solo competitions, and even the California Honor Choir. I won many competitions and singing was such a huge part of my life. Now, I just want to cry. I was a first soprano and now I am lucky if I can sing Alto at best and even then I sound strained. This may not seem like a big deal to some people and believe me I am thankful to even be alive, but it makes me so angry that it is just one more thing that cancer has robbed from me.

The second is that after almost three years of continued treatment, chemotherapy is destroying my teeth. Chemotherapy not only works to kill the bad cells in your body, but it destroys the good ones too. Coupled with that knowledge and the side-effect of dry-mouth, I am dealing with some very serious dental issues. It's hard not to be angry and of course sad that I seem to be dealing with one thing after the other. I'm only 37 years old - how did I get to this place in my life?

Of course, there is also the mental aspects of treatment. If is wearing on me both physically and emotionally. I'm heartbroken that many people that I thought would stand by me have truly abandoned me. Cancer really defines your relationships and tells you who are your "true" family and friends. I have also been a very strong person and have a very high tolerance for pain. I do not complain much and I push myself to the absolute limit. I do everything that a person that is not sick does. Its to the point now that I think many people forget that I am actually sick. In many ways, I am grateful for that. I like things to be done a certain way and I have a hard time believing that anyone can do things the way I like them done.

So, I guess it is a good thing that I am getting this "mini-break". I need to the time to get myself together both mentally and physically. To let go of the things that I can not control. To go through the grieving process of the things that I have lost and then move on. It's all I can do.

So, a huge thank you to all of my friends and family that have stood by me when I needed it the most. As always, I thank those that have kept me in their thoughts and prayers. I consider myself to be a very lucky person and so thankful for each and every day.

Until next time,

Friday, March 30, 2012

2012 Colon Cancer Alliance National Conference

I am excited to announce that I will be flying to Baltimore, Maryland in July to attend the 2012 Colon Cancer Alliance National Conference. I am so excited to be able to connect with professionals in the Colon Cancer Community as well as patients and survivors. I know that I will come back with a lot of information to share with my fellow colon cancer fighters.

You can read more about the conference here: 2012 Colon Cancer Alliance National Conference

I look forward to sharing the information from the weekend with you in late July. :)

I'm also working hard on a couple of other blog posts that I think will be relevant to patients and survivors of colon cancer, so look forward to those in the near future.

Much love,

Saturday, March 10, 2012

Cancer Patients and Survivors - Exercise??

I am asked consistently – How do you do it? Biology has a lot to do with it. I have been very fortunate that treatment thus far has been very successful at keeping my cancer “stable”. However, I do attribute a lot of my success so far to various other components. This blog post is just one of the many ways that I have chosen to live that has been beneficial to my physical, emotional, mental, and spiritual well-being.

Cancer patients and survivors should strive to get the same 150 minutes per week of moderate-intensity aerobic exercise that is recommended for the general public, according to Schmitz, who is part of a 13-member of American College of Sports Medicine expert panel that presented the new recommendations.

Though the evidence indicates that most types of physical activity – from swimming to yoga to strength training – are beneficial for cancer patients, clinicians should tailor exercise recommendations to individual patients, taking into account their general fitness level, specific diagnosis and factors about their disease that might influence exercise safety, the panel recommends.

So, the former recommendation that patients undergoing chemotherapy should rest more is no longer true. When I first began treatment back in 2009, I was very week and fragile. I had lost 60 lbs from treatment and could barely walk to my kitchen – let alone exercise. As I have become acclimated to treatment, I have found that the more active I am, the better I am able to deal with everyday life. Even a consistent regime of walking is beneficial to a cancer patient and to survivors. When I make the time to make exercise a part of my day, I just feel better. It not only helps with the physical aches and pains, but also helps me to manage my stress. There are just so many benefits.

Yesterday, my daughter and I registered for our first half-marathon here in Minnesota. I am excited to share this experience with her and it is something that she will remember doing with me for a lifetime. None of us are promised tomorrow, so I find that in coping with the mental and emotional aspects of having cancer, planning future events has helped me to remain positive. Plus, there is the added benefit that it is a healthy activity that we can do together. A couple of years ago, I would never even have dreamed of being in a place where I am physically capable of running or even walking 13.1 miles. I’ve come a long way and I attribute it to being active and just living my life.

Tuesday, December 27, 2011

Lots of Living to do

It's been awhile since I updated this blog. I got into kind of a funk where I got tired of always discussing the Big "C" word. In my everyday life, I try to live my life positively and immerse my thoughts and self in other projects. Lately, I have been digging into my classes, training for a half-marathon with my daughter, and just enjoying every moment with my kids. This post may end up pretty long - as I finally have something to say and a lot of updating to do.

I can't believe that another year has come and gone. 2011 passed in a flash. I have been blessed to have celebrated another birthday this year (my 37th) and shared another Christmas with my three beautiful children and my boyfriend, Mark. We had a great Christmas together and the kids are really happy. I even managed to catch the three of them in one photo on Christmas Morning!

My daughter bought me the most beautiful necklace for Christmas. she couldn't wait to give it to me, so she actually gave it to me on Christmas Eve. I had been admiring this necklace while we were out shopping, but I never dreamed that my daughter would buy it for me (It was pretty expensive for a little girl to buy) Isn't it beautiful?

Christmas morning, the kids were excited to open their gifts and I think Santa brought them just what they wanted. The boys spent the day playing quietly with their new toys and Kaylie enjoyed some of her new loot before hanging out with some of her friends and exchanging gifts with them. Mommy also got a very unexpected Christmas gift from Mark. We've been together for 2 years now and he bought me the most beautiful ring for Christmas. Gifts aside, the best part was being with my kids for another Christmas. The kids had their Winter break from school and the boys got lots of snow time in with Mark.

We all quickly got back into the routine of school, work, and treatment for me. School has been great for me and I reached a major milestone in my education this year. I finally finished all of my general education, only have my major classes now and I graduate in less than a year with my BA in Early Childhood Education. I'm seriously considering taking a short break (3 weeks) and diving right into classes for my Masters.

As for my treatment update, I got a short "break" from treatment over the holidays and resumed on January 4th, 2012. Things are going pretty well and I am feeling great. I had a few difficult cycles of treatment with some pretty nasty nausea and vomiting. My anti-nausea medicine decided to stop working, so my Oncologist quickly found a new medicine that has been working great for me. My last scan showed the cancer as stable and actually some improvement. Still thinking positive and living in the moment.

Yesterday, my daughter and I registered for a half-marathon here in Minnesota. It's in August and 169 days from today. We are excited to do something so positive and rewarding as a mother-daughter experience. Something that the two of us can be proud of and never forget! So, since it's still cold and snowy outside, we have been training indoors on the treadmill. Looking forward to doing some runs outside when the weather gets nicer. We are seriously considering doing the Tinkerbell Half next year as well. Lots of planning and saving would have to occur to make that happen.

I'm in a much better place in my mind and I need to think of this blog as a journal of my life and less of a cancer blog. Thanks to all of you for your continued thoughts, prayers and support. It means more to me than you know.

Until Next time,