Becoming Aware About Blood Cancers

Did you know September is Worldwide Leukemia and Lymphoma Awareness Month? Well, neither did I until a few days ago. Actually, up until a couple months ago I didn’t even know what lymphoma was.

Charity, awareness, fundraising, these are all things that I didn’t give too much thought to before. I’d play my part, feel good about myself, then move on with my busy life. Now that I am one of the growing number of faces affected by cancer, my view of the whole thing has completely changed.

First, let me help raise the awareness by describing these cancers a little more. They are not your typical “get tumour, get operation” cancers. That is because they start in the blood. The cells that travel all through our bodies which are not just located in one convenient place.

There are three types of cancers that are generally categorized as blood cancers – leukemia, lymphoma, and myeloma. There are probably hundreds of different sub-classifications from here, so today I am just going to point out the main differences.

Leukemia starts in the bone marrow. Inside our bones is where the white cells are created, and these cells can rapidly grow, turning them cancerous. Myeloma also starts in the bones, with a different kind of white blood cell called plasma.

Lymphoma, the cancer I have, is sort of like the next step in the cell process. The white blood cells go from the bones to the lymphoid system, an array of complex vessels that is part of our circulatory system.

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Once in the lymphoid system, the cells become known as “lymphocytes” and move around the system, flushing out through small nodes at the end of the vessels. It’s also where immune responses are stimulated, making it a part of our immune system.

The cancer I have is of those lymphocytes. Specifically, of a “B” type of cell that designates it as “Hodgkins Lymphoma.” This type of cancer is actual very predictable in how it grows, often starting with a mass of growing nodes in the throat or chest. It also responds very well to chemotherapy. Blood cancers can’t always be operated on as they don’t create the big lumpy tumours we are more familiar with. I think of it more as a “shadow” of extra, unwanted cells. I personally find blood cancers more scary because of the cell’s ability to travel anywhere in the body and spread to organs.

Blood cancers, like any other kind of cancer, can happen to anyone at any time. But you’ll notice they are the most common types of cancer in younger people. And this is where awareness is important!

As I’ve mentioned many times before, it’s not like someone can just get cancer at 20 years old, beat it, then forget about it. Getting cancer at such a young age sets patients up for decades of potential health problems as a result of our still-outdated treatments.

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Chemotherapy is an incredibly harsh therapy that kills the good cells along with the bad cells. For example, apart from making one’s hair fall out, it can also cause infertility. A big deal to a 25-year-old woman like me. Radiation puts people at risk for other cancers down the road. A much larger risk to take if you still have 60 years of life ahead of you. To the point where I may not get radiation to my chest because of the high associated breast cancer risk.

I had no idea just how outdated our cancer treatments were until, obviously, I started receiving them. When people say that “chemo isn’t as bad as it used to be” it’s not that the chemo has necessarily changed – it’s that there have been more advancements in drugs to take along with it to make the side-effects more manageable (thank you Zofran!!).

What we really need are treatment options that don’t kill the healthy cells. In today’s advanced medical world, it sounds like an easy task. But it’s not. It’s still really hard to make a medicine that can distinguish between the healthy thriving cell that grows the hair on my head, and the bastardly cancer cell that wants to take over my chest.

There have been small advancements in recent years, and scientists are still working away at finding modern treatments. But as we know, research ain’t cheap. Part of raising awareness is inspiring people to take action on top of that. There are all kinds of way you can give back if you feel so inclined. You can check out the LLS website. I’m a big fan of donating to your local oncology clinic and cancer research centres. Or, in the tune of The Great Fundraising Act, find an individual cancer patient who needs your help.

Even if you can’t give back, just having a greater understanding of cancer is a good start. In a world where “awareness” is wearing pink boas and updating our Facebook statuses, I think it’s important to know that there is much greater depth to this big bad disease. You don’t have to know all the science behind it, but you should know there are real people dealing with real problems because of it.

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Posted on September 6, 2011, in Cancer and tagged , , , , . Bookmark the permalink. 27 Comments.

  1. I remember some really alarming stat about the percentage of doctors who wouldn’t undergo chemo if they had cancer because of how harsh it is on your body. It’s a tough decision to make- chemo to kill everything or costly, time consuming, probably-not-FDA-approved alternative treatments that worked in a few people and might help you.

  2. Love this post. My ex-mother in law (we remain close) just came out of the hospital from having her bone marrow extracted, cleaned of myeloma cells, and transplanted back into her body. It was a very harsh treatment (her immune system had to be killed prior to the transplant of the cleaned cells), but it should give her a few more years with us.

    There is much more to awareness than changing your Facebook status.

  3. Can I just say how much I hate the facebook status updates about cancer? Ugh. I think the current one is to pretend you’re pregnant to raise awareness? I don’t understand how that helps. . .

    Loved this post.

  4. Great post.

    My grandma had Myeloma. Unfortunately, they dismissed all her symptoms and chalked them up to ‘age”, she was never treated. Awareness is key.

  5. I hope one day soon research leads to better, less destructive treatments for cancer!

    I’m with the above poster about the new silly Facebook campaign. Even my teen daughter said that instead of doing a silly post making everyone think you are pregnant you should do something productive like donate money or do a charity walk!

  6. http://www.lightthenight.org This is on the leukemia and lymphoma website. Light the night is a wonderful way to get involved and raise money for the foundation!! They have walks in the US and in Canada during the money of September.

  7. I totally agree with you, knowledge is really the first step. Besides increasing people’s ability to feel compassionately about the subject, I think it also makes it a lot easier for a bystander to become committed to fighting the illness (financially or otherwise) when you actually know the details of a disease! Thanks for all the info!

  8. Well said Susan! I posted about it today as well :) We have a Light the Night walk coming up here in Utah on September 24th, so we are trying to raise awareness. I agree that awareness is SO important. I really liked reading what you wrote about all the treatments, etc. I have to have radiation, but my “tumor” was found in my hip area and that is where I will get radiation. It was 10 cm, which is right on the border of being “bulky”, but a team of docs recommended it for me. I am SO worried about getting another type of cancer down the road because of it, but I am hoping that the field they radiate does not hit any of my organs in that region. I was assured that I would be getting such a low dose of radiation that I shouldn’t have any problems. I am hoping that is the case. Caner is hard and awareness means so much to advancing how we treat it. Thank you for all the info in this post :)

  9. You’ve done an excellent job of explaining those cancers! I agree about the Facebook statuses. My husband is a melanoma survivor and I lost my dad to throat cancer two years ago….personally, I find the FB thing offensive, like people are trying to make cancer a cliche, cool thing to “like”. I realize most of them have good intentions at heart, but as someone else said, donating a few bucks to cancer research or your local cancer clinic is far more effective and heartfelt, IMO.

    In other news, I made your pulled pork on the weekend and OMG was it ever delish! My husband blurted out that it was much better than the dry pork I ususally do in the crockpot…um, thanks hubby? LOL. Thank you so much for that post…Pres.Choice smokin stampede bbq sauce is my new favourite thing. On that note, time for leftovers!

  10. Hi Susan,

    I found your blog just before The Great Fundraising Act through another blog and have been following you ever since. I work for one of the largest Ronald McDonald Houses in the world. We provide housing and assistance to families of pediatric patients, many of whom are cancer patients undergoing treatment or waiting for a bone marrow transplant. I enjoy reading your blog for a look at what the patient goes through from the patient’s perspective (the people I interact with on a daily basis are mostly parents or other family members and the patients who I do spend time with are usually pretty young and not often in the mood to articulate about their day at the hospital!) I also enjoyed your recent book recommendations – I just started “Everything Changes” a couple of days ago! Thanks so much for being willing to share with the world; I think it really does do a lot for awareness.

    I just wanted to add that one more thing people can do to help is become a bone marrow donor. This is different from being an organ donor in that you can donate bone marrow without being dead! Most donations in the USA are currently being taken from blood cells instead of by drilling into your actual marrow so it’s usually a fairly simple process involving shots to boost your white blood cell count and then a few hours hooked up to a machine that your blood circulates through while the extra cells are pulled out. In the USA you can sign up by going to http://www.marrow.org. In Canada, google tells me that you can go to http://www.blood.ca and either register or get more info there.

    Thanks again for all the writing you are doing on this process!!

    Katharine

    • Yesyes! Great recommendation! I forgot to mention it here, but I’ve been encouraging friends and family to do it. And not just because I might need to borrow their marrow some day ;)

  11. Hi Susan,

    I live in your city, and I inadvertently started following your blog through a friend of mine who lives in Ottawa… And now I’m hooked! I’m a nurse and I worked in an oncology department about 3 years ago (at the other hospital ;-)) Your blog posts and your story have touched me, and I find you very wise, beyond your age. I have never commented before, but I just wanted to wish you good luck with your battle!

    C.

  12. Very informative! The chapter I just read for my Anatomy & Physiology class talked about the type of tissue that sends out cells to the lymph nodes so this post was particularly informative to me. I loved the last paragraph, very poignant :) Keep fighting the good fight!

  13. I love this post. There have been so many people in my life affected by this terrible disease. I hope they can find a cure one of these days!

  14. Thanks for the lesson! Its amazing the advancements that are being made in cancer research but it just takes so long until its available here – and in Canada its even longer. There was a report out a few months ago that found that as Canadians we are not getting access to the most advanced forms of treatment.

  15. Great post, but I will say it leaves out one thing that I’m rather passionate about (and actually currently working on) – research participation! The National Cancer Institutes here declared that most studies would take place in 1/3 to 1/2 the amount of time they do, if people would participate in research in greater numbers. You don’t need to have cancer to participate, however, and at least in the US we have websites such as http://researchmatch.org where you can sign up to be a volunteer.

    Michael J Fox had a great quote recently in the San Diego Union Tribune – “Every clinical study aims, in some way, to fulfill the promise of scientific innovation – but none of these studies can be successful without the participation of committed volunteers. There is no Department or Secretary of Cures. It’s us.”

    And I’m also glad someone else mentioned the marrow registry. I’m on it, because at least here in the US, the biggest areas they’re missing are people of ethnic backgrounds. I’m a mixed breed myself so it’s unlikely I’ll ever have a match, but there’s always need for more!!

    • Yesyes! So very true! That’s a good website too. My only resource for research participation is my doctor and the internet, and my doctor doesn’t know a whole lot about new research projects, only the ones that are already pushing out data.

      • Yea unfortunately that’s the #1 reason why docs don’t send people to research studies – the information is all over the place and it’s really hard to find the right fit. I wouldn’t want to bother with it either!

      • I found this site which seems to be a Canadian version of something we have in the UK http://www.canadiancancertrials.ca Your doctor should really know about things like this.

        Loved your take on awareness. I work in science and whenever I hear “it can’t be that hard to cure cancer'” and or see the “Cure cancer this year” Facebook status it annoys me so much. I think a lot of people just don’t understand what cancer is. One person’s breast cancer isn’t the same as the next ones. We just call it that as it’s easier for people to understand.

        • Thank you for sharing that website!! And I totally agree that “cancer” is such a BROAD term. I really learned that while staying in the oncology ward. I met a lot of people who were suffering from very complicated and unique conditions that “cancer” just didn’t properly describe.

  16. Do you mind if I steal this idea for my blog too? I actually spoke to someone recently who didn’t even know lymphoma was a type of cancer…

  1. Pingback: Becoming Aware About Blood Cancers ? The Great Balancing Act | carisacojw

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