A blog about my journey as a 27 year old nurse with Stage 2 Primary Mediastinal Large B-Cell Non-Hodgkins Lymphoma.

Please visit my other blog too: http://baldprideproject.tumblr.com

25th July 2014

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What’s next?

It’s been awhile since I’ve written. But everything has been going well. My tests from my last appointment looked good. My thyroid levels were normal.

They set me up with an appointment for the survivorship clinic and I went to that. It’s an appointment with a nurse practitioner that goes over all of the risk you have for future diseases as a result of your cancer treatment. My biggest risks are cardiac and lung problems in the future like heart failure and COPD, or lung cancer. I do have an increased risk of breast cancer, but it’s only like 20% higher than people who haven’t had chest radiation. There’s a few other smaller complications as well.

It’s weird because part of me kind of just thought, okay this is in the past. The chemo and radiation are out of my body by now, surely, and now it’s all just recovery. But she went into depth about how the various meds and radiation continue to work in your body. Steroids, even though I was only on them for 5 days every 3 weeks for 5 months, put me at a continued risk for osteoporosis throughout my life. All of these things will basically cause premature aging of my systems. The radiation essentially burned the tissues in my airways and my blood vessels in the chest, and caused scar tissue. So when I notice myself being short of breath easier than I think I should be, it’s not just in my head.

The good news is that studies have shown that exercise is the best way to limit these things and prolong my health. By exercising I’m forcing all the scar tissues to stretch and become more flexible, instead of continuing to let the scar tissue harden and constrict. Diet is another area in which I can prevent things like heart disease as a result. I met with a nutritionist to go over my diet while I was there, and she felt I was doing really well with my diet. She said the one thing she wasn’t as familiar with was nutrition in athletes and she was going to contact UW’s athletic nutritionists and see if they could give me some info.

Needless to say, this appointment was a little startling. Like I said, I often try to put the effect of all of this behind me and move on. I think about the patient’s I take care of with heart disease and COPD and I’ve never wanted to be like them. It’s a horrible way to go. But, I’m doing everything I can to stay healthy and just hope that if/when I have these effects, it’ll be a long time down the road.

While I was there I also talked with the nurse practitioner about the Tamoxifen study to prevent breast cancer, and ultimately I’ve decided not to join the study. I just really don’t trust Tamoxifen and don’t think my risk is high enough to take the medication. I’m also worried about messing up how well I’m doing by starting another medication that I’m not sure I need or not. I don’t like taking a lot of medications, so it’s always a struggle on if I should or not. There was also some lifestyle changes around birth control that I would have had to make, and really wasn’t interested in. It is also a lot of extra tests and things that I would have to add to my schedule. It all sounds really selfish, I know, and I hope I’m making the right decision. I always really want to help advance medicine, but I have to weigh it against the impact on my life first. 

Now there’s another study they want me to join involving taking high doses of flax seeds in order to possibly prevent breast cancer. I’ll have to take a look at the consent. 

Tagged: cancerchemosurvivorlymphomasccaseattlewashingtonresearchtamoxifenbreast cancercopdheart failurelung cancer

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11th April 2014

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When the receptionist at the cancer center recognizes you and says, “you look so good,” after not seeing you for awhile! I love the SCCA! 💗

Tagged: cancerchemoradiationsurvivorlymphomanonhodgkins

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10th April 2014

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Well I have my 6 month lab draw on Friday along with my routine meeting with the doc. It’s amazing how many times I’ve forgotten about this little appointment and then was reminded when I looked at my calender! The worst part is that I have to get up at the ass crack of dawn (about 7:45 in my world) for it.

I also would like to talk about this study they want me to join to see if a low dose of tamoxifen will reduce my risk of breast cancer in the future from the chest radiation I had. I dont think it’s appropriate for me because my complex migraines put me at a higher risk for stroke, and if you are at increased risk you shouldn’t be on tamoxifen. There’s also the thing my husband found that said not to eat soy while taking tamoxifen, which isn’t going to happen. I also didn’t think my risk for breast cancer was all that high, so the side effects may not be worth it. I also just don’t really want to put more crap in my body.

But we’ll see, I have some more research to do to see if the benefits outweigh the cons. I would also hate to be doing so well and then start this medication and have some horrible side effect.

Tagged: cancerchemoradiationlymphomanonhodgkinsbreast cancersurvivorremissionresearch

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18th March 2014

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karaisafourletterword said: I was diagnosed with the same type of lymphoma in November that you had and I'm coming up on my last 2 treatments. The end of chemo is definitely hard, but I'm worried that once I'm done I will just be living my life scared of a reoccurrence. Does that feeling ever go away? How did you deal with these feelings, if you had them? Do you ever go a day and not think about it?

Congratulations on almost being done with treatment! The last few rounds of chemo are the hardest!

I remember feeling the same way when I neared the end of chemo. When you have cancer and you’re undergoing treatment that you know you’re going to survive, you’re not really worried about anything. I was the happiest and most carefree up to that point, that I had ever been in my life when I was in the process of kicking cancer’s ass, surprisingly. I think it’s because I felt the worst that I could imagine, had happened, but it was under control. Then when you get closer to treatment being over you start to worry about relapse because there’s no longer anything fighting the cancer you had.

It’s amazing most days I don’t think about having cancer at all. Sometimes it’s hard for me to believe I even had it. When I do think about it, it’s usually in the sense of being proud to be a survivor and accomplishing what I am now. There are moments where the reality that I had cancer, and am lucky to be alive, and that my life can be taken from me at any moment hit me like a ton of bricks. This actually just happened to me the other day. It usually happens when I’m on a long peaceful, beautiful bike ride. It hits me to the point that I almost become tearful about it.

Overall, I would say the fear of relapse gets better with time. I was never one to get scared when it was time for a scan, as long as I was feeling fine. There was one scan when I thought I was having symptoms and so that made me a little nervous. There are some people that get severe anxiety every time they have to get a scan, so I don’t know if you are one of those people.

But mainly, I just have a new view of life and really try to live every moment exactly how I want to be living it. In the end, you really can only live life the best way you know how to. If you’re going to get cancer again in the future or not is really out of your control. So try not to think too much about it. All worrying about it is going to do is decrease the happiness in your life for right now, and that’s no way to live. 

Tagged: cancerchemolymphomaNon-Hodgkins Lymphomasurvivorremission

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21st November 2013

Photo

Nurse becomes the patient turned 2 today!

Nurse becomes the patient turned 2 today!

Tagged: tumblr birthdaytumblr milestone

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Source: assets

2nd November 2013

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Had my follow up scan today and labs and everything look good! The scar tissue continues to shrink. I continue to be in remission almost 2 years after my original diagnosis. I’m so thankful for my health and my life.

Tagged: cancerchemolymphomanonhodgkinsradiationremission

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9th October 2013

Video reblogged from Ryan Scout_FTM with 27 notes

ryansallans:

Blushing aside, it is really important for anyone with testicles (that aren’t of silicone form….like me) to conduct monthly testicular exams. According to the American Cancer Society, “almost half of all cases of testicular cancer are in men between the ages of 20 and 34.”

I’m tired of seeing women topless with perfect breasts or implants who have never had breast cancer, saying “I’m doing this for breast cancer.” Please, you’re taking the opportunity to show the world your tits. If you really want to do something for the cause… create more videos like this that actually could benefit humanity by showing how to detect cancer in an early stage.

Tagged: cancerbreast cancertesticular cancer

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12th August 2013

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Just got an e-mail that my next set of labs, my CT scan, and follow up with my oncologist are November 1st!

Tagged: cancerchemosurvivorlymphomaNon-Hodgkins Lymphoma

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6th August 2013

Quote reblogged from Every story has two sides with 3 notes

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren’t there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the ‘good’ living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn’t show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I’d have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.

When my kids kissed me impetuously, I would never have said, “Later. Now go get washed up for dinner.” There would have been more “I love you’s.” More “I’m sorry’s.”

But mostly, given another shot at life, I would seize every minute…look at it and really see it .. live it .and never give it back. Stop sweating the small stuff.

Don’t worry about who doesn’t like you, who has more, or who’s doing what.

Instead, let’s cherish the relationships we have with those who do love us.

Let’s think about what God HAS blessed us with. And what we are doing each day to promote ourselves mentally, physically, emotionally. I hope you all have a blessed day.

Erma Bombeck (via crazy-bumblebee)

I agree with everything except the god crap. Make the most of everyday!

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28th June 2013

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I’ve seen a lot of posts lately about “foods that cure cancer” and we “just need to go back to basics and we wouldn’t need modern day medicine for cancer.”

While the sentiment is nice, it’s unfortunately not true. My whole life I tried to do everything “right” convinced that if I did I wouldn’t be affected by horrible illnesses that “other” people got. I love working out. I don’t smoke. I don’t drink. I don’t do drugs. I drive an electric car. I’ve been vegan for 12 years and vegetarian for 14. I eat organic. I’ve eliminated most plastic in my life. I don’t use chemicals in my house. I’ve always tried to make a positive impact on the environment, etc.

But I still ended up with cancer at the age of 27. What I’ve learned from this experience is that you can do everything “right,” and still end up with a horrible illness. This doesn’t mean you shouldn’t do what you think is right. I still follow all of my previous values because beyond my health and the health of the planet I feel it’s the right path for many other reasons. But I understand now that some things are beyond my control. So I don’t stress myself out over not being perfect anymore, and I don’t pretend that there are easy answers when it comes to preventing and curing cancer.  

Tagged: cancerchemolymphomaNon-Hodgkins Lymphomasurvivordietlifestylepreventioncure

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