Try and Try Again
Happy Valentine’s Day everyone!!
So the big news you’ve all been waiting for… My lovely white blood count… Well, unfortunately (or fortunately depending on how you look at it), my count only rose by 200. Putting me at 1,600 this morning. Not high enough for chemo.
But I did get my Herceptin (and a bonus afternoon to myself while Miss M was in daycare). And this also means I won’t have to deal with any yucky side effects during the week when no one is here to provide back up support.
So maybe it was meant to be this way after all.
Today I also attended my first breast cancer support group at the local hospital. Interestingly enough the topic of discussion was alternative and complementary treatments – right up my alley… So I spoke of how i’m trying to keep my white blood cells up by using natural methods instead of pharmaceuticals and everyone seemed very intrigued at this foreign and unfamiliar way of doing things. Turns out only me and one other lady there has ever tried anything other than what the doctors tell you to do. While a lot of the holistic stuff just seems second nature to me, I’m realizing a big segment of the population has no clue about this sort of stuff. So we went on to have a lively discussion about energy work, supplements, and the power of the mind. And then we traded stories about losing our hair and having fun with wigs. All in all a great night.
One thing I continuously notice in my journey is how much younger I am than all the other cancer patients I encounter. On some level I get that all our experiences are similar and I know I can learn a lot from everyone – no matter the demographics… And yet I would still love to find some metastatic stage 4 reading materials geared towards the needs of a young mom and not just women in their 60’s trying to break the news to their grandkids.
I would so love to chat with other cancer moms who are trying to balance their needs with those of their family… Trying to figure out who’s gonna watch the kids while they go for their umpteenth MRI… Trying to be fully present and available as a mom even when you’re totally shot from chemo…
I’ve put calls into two organizations to find a “mentor” in the same boat I’m in – And so far no luck. I’ve also signed up for another cancer support group in Dayton that is specifically for young folks. So we’ll see.
In the meantime I continue to gather wisdom from every source possible. You never know where the answers will lie.
Peace. – T
Hi, you obviously don’t know me as I just found you the other day but I follow @xeni, Xeni Jardin, one of the founders of BoingBoing (basically, nerdvana). She was recently diagnosed with BC (out of the blue, she was liveblogging/tweeting her first mammogram for her followers) and she has heaps of Twitter followers and connections through BoingBoing, especially younger people.
If you tried connecting with her there, she might retweet your request for connections. She and some friends of hers with BC are all 40ish or under, from what I understand.
Twitter can be a low-pressure way to connect with people all over the world, if you’re not already using it. Super if picking up your phone is all you can manage. Good luck out there.
Here is a link to a MD Anderson Cancer Center webpage that is related to your situation:
http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/parents-with-cancer.html
Hope this helps!
great that u can share your natural approach with others- one step at a time to change peoples way of thinking.. well done u.. hope u find another person who is similar to you in age and life so u can get something back from them too..
much love xx
You don’t know me but I’ve just been contacted by a friend of yours, Heidi… She thought it would be helpful for us to meet 🙂
I am 36 and I just finished treatments for breast cancer. I also have a support group I formed for women under 40 (or close) who are going through this, as our concerns are different than those of women that are older. We meet once every week, but you could come whenever you’d like. We meet in maple ridge.
Also, two of us (myself and another 36 year old) are hugely into naturopathic stuff – as an addition to the regular treatments) vitamin C therapy, mistletoe injections, metformin and lots lots more. There is a great naturopathic oncologist in Langley that we see. So, again, it would be great to meet with you and compare notes.
Lastly, there are four of our 16 members that are stage 4 (two of them with young babies as they were diagnosed while pregnant) so you could talk to someone who understands the challenges of that. I think 4 of our members are HER2 positive as well…
If you’d like to get to know us, email me directly (I don’t want to leave my number online) and we can talk.
I also asked Heidi to pass you my contact info, so you will probably hear from her as well 🙂
Hugs to you,
Michelle
It seems obvious to me that YOU are the one to teach these people the new (ha!) way of using a natural, holistic approach! I realize you have zero free time now, but it seems there’s a hole there that needs to be filled – what if you recorded your information, thoughts and findings as you go along for a future book/pamphlet, to help others your age?
It could be a wonderful opportunity to do something amazing for yourself and for others!
*hugs*
Beating it! Yes You Can! I am so sorry about your loss first, there are no words…For you now, are you going natural with foods, no GMO, lots of vegies in organic stews? Are you taking the reins and changing your life? Chemo weakens the body yet you seem eager to get the treatment, praise God for every day your blood count gets better, I am…To be a winner you need to think like one and the tide could turn because it does for lots of people in your shape. Cancer can and does go into remission and it is in everybody’s body…You can do it, beat the cancer, God can give you strength when it feels like none is there. Rest when you need to no matter what, that’s key too, and so is love…
I don’t have breast cancer, but my wife does and she has been living with it for the past 7 years. We’ve been all over this roller coaster. When she was diagnosed, we started living for the next five. When it came back in her liver, bones and lymph nodes, we started living for the next 6 months (it’s since been three years).
During that time, she took up running and an improved focus on diet and exercise. She’s since run two marathons and the occasional half or ten-mile race all while helping raise our 9-year-old daughter and working full time.
I’m not here to talk her up, because this is your blog. My point is that there’s a balance between what they tell you, what they give you to take and what you do to take charge of your own health and well-being.
If you are not putting good nutrition into your body, the side-effects of those cancer-killing drugs will be that much worse. Don’t forget external influences too – the news, costly relationships, on-again, off-again friendships. Toss them aside. If you’re spending one second on something negative and you don’t have to do, don’t.
You’re on the right track by seeking out things you can do for yourself. Support groups are good because let’s face it, this is a very lonely path but there are many people out there who have walked it before.
There are resources, the young survival coalition (youngsurvival.org) is a decent place to start. Reach to recovery and others can put you in touch with someone as well. We never participated much in these clubs, but knowing we aren’t alone has been enough for us.
In this club, we live with the baggage of anyone stricken with a life-threatening disease, but it has the ability to teach us to live this life fully awake. Cancer can make us feel so powerless, and the best weapon we have for fighting it is our own will.
I wish you the very best.
Wow! Your wife sounds amazing! These are the kind of ladies I’m talking about. Thanks for sharing. It’s good to know they’re out there. And thanks for the words of wisdom too. I couldn’t agree more. Wishing your family all the best on your journey as well! – terri
Hi! Friendly stranger here who just found your blog through Boing Boing. Your blog struck a chord, as I was diagnosed with breast cancer last year. My cancer wasn’t as acute as yours (I had surgery and radiation, no chemo), but it was enough to give me an idea of what you’re going through.
You and your family are in my thoughts and prayers, and I’ve made a small donation. I know how much little kindnesses meant to me while I was sick, and I’m very grateful to be able to pass that on. I only wish it could be more. Bless you!
You might email the xkcd guy..
http://blog.xkcd.com/2011/06/30/family-illness/
You are a strong and amazing person. I will keep you in my prayers.
Hi! Another friendly stranger, courtesy of your father. I’ll be lighting candles for you.
Best wishes on your journey to wellness. I am almost through my 28 radiation days and 10 chemo days for anal cancer. I also see an acupuncturist who mixes custom herbs for me each week. My white blood count jumped from the low of 2,000 to 11,000 in 2 weeks.
I encourage you to accept help from your community- meals, play dates, errand running. It really helps lighten the load of getting through the rough days.
Sending healing light your way!
You might find this site helpful: http://www.momswithcancer.org/
Hi Terri Luanna,
Thanks for sharing this with us. A while ago I did some coursework with ReThink Breast Cancer. They’re a breast cancer support network targeted at young women and their families, and I think you might benefit from their online community. This is the address: http://rethinkbreastcancer.com/
This site is fantastic! Just what I was looking for. Something fresh, hip, young, and understanding of where I’m at. Figures it would be a Canadian organization. Too bad I’m stuck down here in the boondocks of Ohio. I do get back “home” to Canada quite a bit though so I’ll try to get connected somehow. Big thanks for sharing. – terri
Have you looked into the Budwig protocol? A simple google search will find it.. I have a good friend who managed to do with this what he wasn’t able to do with Chemo. Sounds incredible and actually it is.. But it really did work for him and he told me he saw many people see great results with it..
Hi Terri Luanna,
I am another who stumbled into your site because of a link from boing-boing.
I read that, and the mention on your father’s site and knew I had to contribute.
I know that this has not been the greatest past few years for your family.
I can’t even begin to express how much your family has touched me emotionally, through the writings of both your parents. I started reading your Dad when I was about eleven, and I got a stripped (no cover) copy of Time Travellers Strictly Cash. (I have since purchased it new, with a cover, so he did eventually get paid. . . ) I loved it, and hunted down everything else he wrote, including his novels with your mom, and purchased each new novel as it was published. The impact they have had on me helped me become the adult I am, or at least parts of the better side of who I am.
I made a donation yesterday, not much in the grand scheme of things, but a little more than I can really afford right now. I consider this a small start of a karmic payback for the last 26 years of humor, empathy and humanity that your parents gifted me.
I wish you and your family nothing but the best.
Yeah, my parents are pretty fuckin’ amazing. So glad their writing has had such a positive impact on you. Having them as parents had a pretty awesome impact on me too 🙂 Thanks so much for the donation. And for reaching out. All the best right back at ya… -T
Terri, you jut radiate positive vibes and just being around you makes me feel happier and more energized. I can only imagine what good effects your actions and thoughts are having on your health. Have a spare moment and decided to come on here and read your writing and it’s absolutely incredible how you have begun turning what would be a tragedy to most people into an avenue of inspiration. You truly do deserve every good prayer, thought and wish that comes your way. Hang in there, and through it all may you have many more good days than bad. You may say “I don’t know how you do it” but I cannot keep up with you, and I have a feeling that’s never going to change!
Passed your request to a friend who is a mom with metastatic stage 4. It saddens me to see another sister ill with this disease. I wish you as little pain as possible and a full, swift recovery.
Another person brought here by boingboing. We Happy Mutants have to stick together.
Hi Terri
I was diagnosed with a small volume of bone mets two years ago when I was 43. I am ER/PR+; HER2-. Have you checked out http://www.mbcn.org and http://www.metavivor.org? There’s also at Stage IV discussion board at http://www.breastcancer.org as well as a “Natural Girls” thread
Young Survivors also has a Stage IV board
http://her2support.org/ has a discussion group for Stage IV HER2 positive women. Hope this helps.
Your Fellow WordPress Blogger
KOB
Katherine – thanks for all the info & for reaching out… I actually subscribed to your blog just the other day! xx -T
I told my story last fall at conference at Johns Hopkins.
Here’s the links:
http://ihatebreastcancer.wordpress.com/2011/10/30/dr-stephen-baylin-rock-star-of-science-and-epigenetic-genius/
http://mbcn.org/special-events/video-file/2011-national-conference-md-katherine-obrien/
Hello! A friend sent me a link to your blog. There is a huge organization called Young Survival Coalition – YSC. We are young women diagnosed with breast cancer. Many of our group are stage 4 with children. You are welcome to join us. We even have a private stage 4 group where the women can talk openly about their concerns. There are a few of us interested in alternative treatments, and I help to moderate an online group that is for those treating cancer completely through alternative means. The YSC has a bulletin board at http://my.youngsurvival.org. But the more active group is on a private group on Facebook. (Long story there). Come join us. Send me an email if you have questions. You’ll have to friend one of us in order to be invited to the FB group. Arlyn
Two people I know have breast cancer and are young like you. One is Amy. She’s on round 2 of BRCA cancer with some added bone cancer throne in this time around. She has a 5 year old son, so she struggles a lot with being young and a mom. Here is her blog:
http://itsinthegenes.wordpress.com/amy/
The other is Susannah. She’s a journalist/blogger/photographer who was recently diagnosed with breast cancer. Her’s is early stage and treatable, but she’s an amazing blogger (IMO) and dishes stuff out with a off-kilter sense of humour. Here is her blog:
http://susannahbreslin.blogspot.com/search/label/CANCER (I’ve tagged it for the cancer-related posts since they’re the most relevant at the moment.)
I have lost a couple of other young (30s-40s) friends to breast cancer in the past few years, and I know how much support and relatability meant to them. I can’t begin to imagine what you (and they) go through, so the best I can do is give you to each other for support and give my money to research.
Hang in there and good luck. Brighest blessings.
Beth