World Cancer Day

Being #worldcancerday, I thought I would post a little something today. Cancer is not a nice word. It evokes fear, and sadness, and bad memories.

Let’s talk about some basics first: Cancer can be generally defined as the uncontrolled division of abnormal cells in some part of the body. There is approximately 30-40% risk of developing cancer in ones lifetime. No two instances of cancer are the same. Cancers grow at different rates, and respond to different treatments.

But generally speaking, Cancer just sucks.

The discussion of cancer also brings up, what for me is a somewhat controversial word; Warrior. I have argued against the use of this word a couple of times in the past, so below will be a repost from March of 2014

The use of the words “Warrior” or “fighter” in reference to Cancer patients baffles me. There are two implications with these words that bother me most.

First is the implication that this is a “battle” with an opponent who fights fairly. This is not true. Cancer does NOT follow any particular regulations. It does not conform to accepted rules of engagement. Cancer is mean. Cancer plays dirty. Cancer is not a fair “fight”. Frankly, Cancer is a jerk. Cancer is the bully on the playground, who is twice your size, steals your lunch money, and pushes you in the dirt. Cancer is an invisible thief who breaks into your life and steals your energy, your health, your peace of mind. But to me, Cancer is not a “battle”.

Second is the implication that those who “lose the battle” against their cancer did not fight hard enough. This is also not true. The best I can hope for is to try to be an active participant in my treatment and situation. My personal motto, as I’m sure some of you are aware, is to “Be assertive”. This, in my opinion, is the way to approach your cancer.

I am sure that there are those who disagree with this. That for some, approaching Cancer as a battle to be won is comforting and reassuring. That is absolutely fine. If that approach helps you to become an active participant in your treatment, then that is what matters. What I think we can agree on though; is that Cancer is cruel. It can hurt every aspect of your life. But it is a situation in your life from which you can learn. From which you can grow. From which you can draw strength. Some of my biggest life lessons have come from Cancer. I learned a lot about myself through my experiences, and it has truly made me who I am today. But I am not a warrior. My situation is not a battle. It is my life. I am myself; a patient, a wife, a sister, a daughter, a friend.  And I am me.

Thank you,

As always, you are your own best advocate. Be assertive, be persistent. If you do not take care of yourself, who will?

Lina

Linampn.com

@linampn

FINALLY!

Just a quick little blog for right now…

I finally heard back from the NP at my Hem/Onc’s office. She agrees that it is probably time for another BMB. She hadn’t realized it has been 9 years since the last one. As for the way I’ve been feeling, she didn’t really have a whole lot to say on that. My next appointment is 8/20, so I’ll talk to the doc about it all, and pick his brain for a while. At the same appointment we’re going to schedule the BMB.

I also spoke with her about getting tested for the CAL-R mutation, so she is going to put in the order for me for my appointment in August. I’m pretty curious to see the results of that. 

Are any of you CAL-R positive?

What about Jak2?

Remember to be assertive!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

OVAC Lobby Day Review

OVAC Lobby Day: 7/7-7/8

This may be a little haphazard, but I’ll try to keep it somewhat organized.

The OVAC Lobby Days took place Monday July 7th and Tuesday July 8th. This is the first time I’ve done any type of lobbying, and was therefore an overwhelming, educational, terrifying, overall exhilarating experience.

OVAC, One Voice Against Cancer is a collaboration of non-profit organizations working together to try to find cures for cancer. OVAC has representatives from all across the country, every walk of life, all cancers. We all spoke of our personal experiences, which are very different, but our goal was the same, so we truly were speaking against cancer with One Voice. There’s something oddly uniting about the subject of cancer. We all know someone who has been touched by it in some way. Each of us at the event had our own personal connection to cancer. That is what brought us together.

Monday started with registration, and for me, a sort of awkward wandering around in the lobby until a few of us got to talking. The ladies I befriended in the lobby each shared their own personal stories. One of the ladies told me about her mother who had bladder cancer. Luckily she had responded to treatment, and is doing quite well now, but the experience is what inspired her to become an activist for BCAN (Bladder Cancer Advocacy Network)The other young lady I had the privilege to meet had very recently lost her sister to brain cancer. The pain was still so visibly fresh for her, and I admire her so much for having the strength to join the Brain Tumor association and tell her sister’s story.

After getting to know one another we went in to begin our training. OVAC Lobby Day 2014: Training DayThere were 88 participants from 30 states, and I’d say about 1/2 of us are newbies, so I was not completely alone 🙂 During training we were given 3 very specific goals, or asks; the end goal is of course making cancer research and prevention a top priority, thereby finding better treatment options, and hopefully cures. Specifically though we were asking for 1) $5.26 billion to be provided for the National Cancer Institute (NCI) 2) to ensure a proportional increase to NCI’s funding when there is an increase in the NIH’s funding, and 3) $510 million to be budgeted for the CDC Division of Cancer Prevention and Control.

These are pretty big things to be asking for, and pretty intimidating to be asking political leaders for them. But who else should we speak to other than the people with the power to help make the changes we are asking for? To speak to the decision makers, to tell them what their constituents want, and need; that is why we were there.

It was stressed to us during training that making a connection with the representative, congressperson, or staffer is a good way to start. Tell them where you’re from; down to the street or the neighborhood, then tell your story. Grab their attention; remind them where they are from. If you can make an emotional connection with them then tell them your story, then hopefully they will remember you better.

So with the goal of being remembered in mind, I plotted out a few ideas for the following day. Knowing that my nerves may get the better of me, I decided that it may be best for me to focus on the emotional aspect of our presentations. I’ve always been a nervous test-taker, and to me trying to remember the facts and figures felt very much like a test. I often get tongue tied when put on the spot, but I knew there were certain facts I knew I’d get right. I decided to focus on my story; when I was diagnosed, what my disease is, the treatment options available, and also the cost of said treatments.

I was in a very small delegation from my state. VERY. SMALL. There were only two of us. So our meetings were rather short. 20140712_140034We started the day on the senate side of the Capitol. 20140712_140114We met with a staffer from Senator McCaskill’s office, and from Senator Blunt’s office. After the meeting with Senator Blunt’s office, we had lunch, then headed over to the House side. 20140712_140123There we had a meeting with Ann Wagner (My state Representative) and a staffer from Sam Graves’ office (my fellow Missourian’s representative) All of the presentations on Tuesday, while brief were very meaningful.

gravois-20120210-00130My favorite part of the presentation is when I would start telling them about PegIntron, the medication that I have had the most success with. At this point I would pull out the box of meds that I brought with me, place it on the table in front of me and say “This drug is not yet FDA approved for use in MPN patients. I have been denied 3 times by my insurance company on the grounds that my purposes are “off label”.  This box costs $2000. It contains ONE dose of medicine. I take this once a week. That’s $104,000 per year for however many years I’m lucky enough to remain alive.” That tended to leave a strong impression on the folks I was speaking to. And then I would start to work in the asks. “With better funding for research, better treatments could potentially be approved for patients. More accessible treatments, mean healthier, more productive constituents.”

 While I was the only person I know of that was there representing MPNs, I am hoping that my presentation was memorable, not just to our elected officials, but also to the other participants. Just about everyone I spoke to had never heard of MPNs. So I’d like to think that I helped educate some other members of the cancer community.

I’m realizing now that I’ve done an awful lot of rambling, so I will leave you for now 🙂 Tomorrow I’ll be posting the mind-body techniques I referenced in my last post!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina

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Living Well with MPNs Review/Recap plus a personal revelation

Hello there, dear readers. I hope you are all having a wonderful week 🙂 The weather here is unseasonably cool, so I’m taking full advantage of it, and writing outside with my wonderful writing buddy, Tesla! (This note is from when I started this blog last weekend lol)

I’d like to start this entry by talking about last weekend. M and I had a fantastic time in Chicago. I was so thrilled that he was able to come with me to the Living well with MPNs meeting!! Firstly I’d like to thank the MPN Research Foundation, and Patient Power for putting on this wonderful event! I was so very grateful to be able to join everyone there. One thing I was surprised by was that it was completely free! The day started at 9:45, they offered breakfast, there were several groups set up with tables, and information. I am going to say right now, that unfortunately my day began with a pretty terrible migraine. My husband and I walked from our hotel to Northwestern’s campus, and just as we arrived in the lobby and got situated, it began. The aura and the pain were terrible for about the first 2 hours of the day, so I was unable to interact with the groups out in the lobby 😦 Hopefully someone who may have been there will have gotten information from the groups that they would be willing to share with me!

As we were called in to the auditorium, everyone seemed a little bit nervous. Kind of like walking into a lecture hall for the first time in college…people mostly kept to themselves at first, and weren’t really interacting just yet. But then as the speaker, Jeff Folloder began to ask questions, and we all started to notice one another nodding along with the responses, and we (at least I) realized that these people were all just like me…we (I) began to warm up a bit 🙂 (I’m referring back to my notes just now, but I’m sure I’m going to miss a few things…I’ll link to the videos on Patient Power’s website as soon as they are posted though 🙂 )

One of the questions that seemed to be a hotly contested issue was the question of age as it relates to the treatment of patients. It would seem that the general consensus USED to be that, for some reason as soon as a patient turned 60, they became significantly higher risk. The implication from the experts (Dr. Brady Stein, and Dr. Alison Moliterno) is that age does not really correlate with ones risk as strongly as the medical community used to think. It is more an issue of whether you have a history of thrombotic events, or heart disease, or other issues that may not mix terribly well with an increased risk of clotting. You could be 79 and have the blood vessels of a teenager, or be in your 30s with the circulatory system of a 90 year old. It really varies by patient.

What made me happiest was how many times I heard the doctors talk about advocating for yourself, and being assertive. I was so, so happy to hear it. It is so very true, and I feel so strongly about it.

The Patient Power event was extremely educational, and I am so thankful that I was able to go.

Personal Revelation:

One of the things that was spoken about a lot was the “itching” and “burning” symptoms in PV/ET patients. I’ve never really thought about it before…but apparently not everyone actually experiencing burning/tingling/itching in their extremities when they take a hot bath/shower. I never really considered it a symptom. For 9 years I completely ignored one of the most complained about symptoms in the MPN world (other than fatigue, that is…). I cannot begin to tell you how dumb I felt when I realized that. lol. It just never occurred to me that it was a symptom of my disease.


 

I’ve got a lot more to say on the subject, but I’m going to head off to continue to prepare for this Saturday in San Antonio! Are any of you going? Do you know anyone that’s going? Please share this with anyone you think might be going! I hope to see you all there! Wish me luck, please 🙂

As always, you are your own best advocate. if you do not take care of yourself, who will?

Thank you!

Until next time,

Lina