Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, April 06, 2014

Thank you for curing my cancer

This is a hard post to write, because I don't want to sound ungrateful. I have a lot of friends. More than I ever knew, who care about me enough to send me their well wishes, prayers and positive thoughts. Friends who have brought us meals, helped with driving kids, or just generally cared for us. I am so thankful for each and every one of you! Every text was received with thanks, even when I just didn't have the energy or emotional strength to reply. This cancer thing is overwhelming at first, and I'm still learning how to fit it into my life. Our lives.

When I was diagnosed with cancer I quickly found myself part of a group of people I never really felt the need to surround myself with: Cancer survivors and warriors. They warned me the "cures" would start coming very soon.

I love that you have all cared for me enough to send me information that will cure me. Every natural, holistic treatment, obscure clinics in Bolivia and other countries, teas, oils, nutritional supplements and drugs with questionable legal status. If you sent me a cure, please know I probably had 5 others sent on the same day that contradict the one you just sent me.

Of course, if I just pray enough, my cancer will go away because clearly I don't have enough faith in God right now. If I did, God would heal me without medical intervention.

I cannot even count the number of people who have told me *their* doctor is the best in the business and I should be going to him/her, no matter how far away that doctor is located. I have also lost count the number of people who have suggested I hold off on treatment to see if their 'cure' works first. Then of course there are those who know more than the medical community does about my cancer.

If you love someone who has cancer, please…please…please don't send them your 'cure'. Your loved one is already overwhelmed with information. Ask them if they WANT the information before you start flooding their inbox. Please don't even insinuate they have not done their own research on doctors, and try telling them your doctor is "the best in the business." You're doing it out of love, but telling them they aren't doing enough to take care of themselves. Please do not even suggest that someone delay their treatment to try an un-studied, unregulated treatment. You're asking them to play a very dangerous game with their lives and the future of their family.

Having cancer means making some really tough decisions about treatment, usually with very little time. How aggressive should I be? How many opinions should I get? It is really difficult to not second guess our own decisions with all the pathological and medical information we have. Please know that Dean and I care more about our family than everyone else except God. We will make our decisions accordingly, using scientifically proven treatments that have a long history of curing my type of breast cancer.


TUC said...

Although it must have been hard to write this post, I am glad you did it. People trying to help often do not realize the stress and frustration they add to a situation. The reminder to step back and wait is one we can all benefit from.

Heather said...

Hey there Leah, I have followed your blog since I "met" you on Downsyn… hadn't checked in for a while and now see all this :( Just wanted you to know we are sending positive energy to you, it sounds like you are already on the road to health! Take care and your new daughter is beautiful :) Heather, Theo (T21) and Zack

Imogen said...

Oh my gosh, that all sounds worse than the 'advice' and stories people share when you fall pregnant.

KW said...

Thank you for your blog--for keeping it real and saying the tough stuff that needs to be said! I just found your blog a couple months ago while researching sn adoption and was all excited before I realized the new laws coming into effect will ruin my chance of not spending lots of money for 'accredited agencies' to compile a bunch of paperwork I could well do myself. But I love reading through your journey! Going through old posts now as I have the time (already have 4 busy kids). So sorry for this challenge and I am praying for you and your family and I have absolutely no advice whatsoever. We are currently building our own house (acting as GCs) and at first people comment that we are crazy not to hire a professional to oversee the project (ummm why would I pay someone to do what I can do for free?) but then in the next breath they are giving advice on how we should go about doing things. But they are also not professional builders! It's just hilarious!

Ian & Ruby said...

I can empathise - I was given the "if you had enough faith..." "if you had been a better Christian ...." eat only fruit & juices ...." but like you say, you have to make decisions in a very short space of time, and with your family and loved ones in mind. I had the care of a 10 year old foster child when I was diagnosed, and made my choices for surgery, chemo, based on my need to be there for her, and for my own grown children. Have faith in the doctors you have, keep positive, and know that you can beat this.... Ruby

viv said...

Oh my goodness I don't visit your blog for a week or two then open it to find this!!!! Oh my oh me ((hugs))) !!

Unknown said...

Leah and Dean

This post surprised me as my sister didn't experience any of what you described!
She did get tons of support, kindness, offers of help, etc but nothing about cures, better doctors, delaying treatments, or any of the stuff you described.
Perhaps its a cultural thing.....

She did however take great comfort in the fact that people took the time to think of her in their day and to send her positive thoughts and that is all I can do for you!
So in the quiet moments in my day, waiting for the school bus or in line at the grocery store I will send you positive thoughts and love!

You are a strong woman Leah, and with Deans help, love and support you can get deal with cancer and all that entails.

Stay strong my friend!

Love Lin (LinMac from Downsyn and Dublin, Ireland)

Alicia Llanas said...

hugs Leah!

Ali - mom to Elías and Eva (México)

Relle said...

It is so sad that you had to even write this post, though I'm so glad you did. I was stunned that people would suggest even half of the stuff you wrote about. It's beyond stunning that other people think they have a right to say or judge your faith or your medical choices. Going through stupid Cancer is hard enough with out having to put up with the wrong kinda help. Praying that you receive a listening ear, hugs, food when needed, help with the kids and house and things that bless your heart. Hugs

mielkay said...

Leah as a former healthcare worker I find it astonishing someone would suggest homeopathic or alternative treatments for such a serious illness as breast cancer. I am a firm believer is some homeopathic treatment for some things but only minor illnesses. Listening or attempting anything unproven could of been detrimental to your health. I think if I would find myself in a similar situation I would trust the licensed professionals who have treated Breast cancer and the treatment is based on years of actual research.
I wish you a speedy recovery so you can enjoy your beautiful family.

God Bless You,