In the past few months I have been trying to collect money for a charity that specifically helps people between the ages of fourteen and forty who have been diagnosed with cancer. This charity was one of two I’ve discovered since my diagnosis that have helped me immensely. Mind you, there are many more resources out there than I even have time to acknowledge, let alone visit daily. For instance, I have found a site called I Had Cancer, which allows cancer patients and survivors to put up personal websites (like Facebook) and meet other patients with cancer. I haven’t found anyone on that site with cholangiocarcinoma, but I have met a few people I speak to via email that have been uber-supportive during my treatments. It’s nice just to have someone say “I’ve been there and I survived.”
Another is my all time favorite message board, even though I tend to lurk more than post. The board is on cholangiocarcinoma.org and every patient on there has the same cancer I do. It isn’t just the survivors and patients, though; it is family and friends, caregivers and supporters all coming together to raise each others’ spirits. It’s incredibly nice to be surrounded by people who are walking in your shoes, who have heard that the cancer is inoperable and we will do our best to treat it. It’s comforting to feel like you are being hugged by a group of people who just get it. The board celebrates everyone’s wins and mourns for those who found the good fight but are still losing ground to the evil C-monster. They welcome everyone, regretfully, and make them feel at home. It’s like the internet version of Cheers, except a whole lot more somber.
I’ve also found blogs by so many other people with cancer. People who, like me, get up every day and do their very bests to just make it through. We go on living, inspired by the fact that others before us have made it too. We keep positive as best we can, we don’t allow much wallowing and we live. Some go on great adventures. Others live quiet lives of normalcy. We share ideas to make it through each day with a smile on our faces. Together we weep to Martina McBride’s “I’m Gonna Love You Through It” (seriously, give it a listen!) and Tim McGraw’s “Live Like You Were Dying.” But we’re really not any different than anyone else. Cancer gave us a new role, but we are still just people who are living.
For the record, my other go to tunes to get through the day are Kelly Clarkson’s “The Sun Will Rise” and Jo Dee Messina’s “Bring On The Rain.”
Today, however, I realized that one of my favorite charities is in a lot of trouble. Alice Crisci is one of the very first cancer survivors I had the pleasure of speaking to after my diagnosis. In fact, the second I left my oncologist’s office after the very first visit, I called Alice. She runs the group Fertile Action, which I have written about before. Fertile Action is a charity that oncologists’ offices refer patients to (mostly female I believe) when they express interest in maintaining their fertility. It is through Alice and her group that I met with the esteemed Dr. Hutchinson, a Tucson fertility specialist. I didn’t know at the time just what that meant. Tucson is really not a hub of younger people. It is very much a retirement community of sorts. There aren’t exactly hundreds of fertility experts here; in fact, I believe at last count there were two: Dr. H and the man who trained Dr. H! When I has asked about preserving my fertility, Dr. Brooks said there was a good chance we’d have to go to Phoenix for that because he had heard rumors that Dr. H had left town. That is why he referred me to Alice and Fertile Action. He knew she’d find me someone that could help.
Alice is…well, magical. I know that sounds ridiculous and if she reads this she’ll probably tell me I’m exaggerating, but it’s true. Alice is a survivor and a vocal one at that. She maintains a blog, writes freelance for several online media sources and has a book published (I’m Too Young For This). When I called her that first day, she was soothing and gave me props for going into the oncologist knowing that I needed to do my best to salvage my fertility. She had been there only two years before. What I didn’t know until today, however, is just what Alice has given up to do this. She was a successful financial consultant who lost her career because cancer sapped her strength. She dove into Fertile Action because no one had talked to her about saving her eggs or wanting to be a mother after cancer. Oncologists aren’t used to those questions. Their patients tend to be past child bearing years (or so young that it is the last thing on their minds) and just want to live. So they don’t ask. Dr. Brooks, as incredible as he is, didn’t ask me. I told him. It isn’t part of their training to think quality of life sometimes. They want to increase our life expectancy, the rest is gravy.
To a cancer patient, it isn’t gravy though. It’s life. We want to live and if having a family is part of our living, we want that too.
Or, at least I do.
So Alice was like a beacon in the dark. I didn’t know where to go for help keeping my dreams of mommy-hood alive. Just weeks before I was a player in the Game of Life, zooming right along in my little car and making plans until POW! My tiny car tipped over and the plastic peg people spilled out, clinging to the precipice for dear life all because of a speedbump called cancer. I could either sit by my car and do nothing, or find a tow truck (okay, this analogy officially jumped the shark but work with me). Alice and Fertile Action were even better than a tow truck; they were a helicopter.
Within hours of calling Alice, I had an email that she found a doctor willing to help me…for free (a word you hear very rarely in the medical world.) He was going to donate his services, she was going to try and get the medications discounted. While I wasn’t given enough time to actually get a harvest done, something I regret not fighting more for at this point, without Alice I wouldn’t have even had the decision. I would have just walked into the oncologist’s office and sacrificed my eggs and my chance at being a biological mother. That’s a big deal to me. I had a rough choice to make in just using the Lupron injections in hopes of maintaining my fertility, waiting a month more to start chemo so I could harvest or do nothing. At least I had the choice, though. I wouldn’t have known my options without Fertile Action finding Dr. H and getting him to help.
Fertile Action, however, runs on donations (they have a “membership” for companies that want to list with them, but it doesn’t bring in much right now.) They aren’t doing so hot right now. The economy is tight and while cancer isn’t exactly taking a vacation, donations are. Until now, I was trying to get OMG 2012 more donations because Fertile Action had led me to them as well. I wanted more attention to be focused on the middle group (the “young adults”) and their issues when facing cancer. But OMG 2012 is sustaining well. They can pay their employees and hold mega conferences in places like Vegas. Alice hasn’t taken a pay check since the company started. All her donations go to creating scholarships for women who can’t afford fertility treatment after cancer; not all doctors are willing to donate their efforts like Dr. H. As such, Fertile Action is floundering. I can’t let other women lose the chance of being a mother because Fertile Action dies out. Women have a right to be a mother after cancer; fertility specialists make enough money. With Alice and her group there to help be an advocate for those with bigger wars to rage, more women will have their dreams come true.
So, I’m going to ask a favor. If you haven’t donated already to my OMG site, don’t (thanks if you did!). I’m going to the conference in March anyway. I’ve collected enough to get my ticket for free and I’m within reach of the travel vouchers. Even if I don’t make my new goal there, it’s no loss. The conference is close enough that I am not worried about the expense to travel. We’re road tripping anyway and it will so be worth it.
I may never get to be a mommy biologically. The Lupron may not have worked and we didn’t harvest eggs. I know that my cancer is…different, that survivor rates for it without surgery are exceedingly low. I’ve faced the fact that my survival might be a few years or a lifetime. There are so many uncertainties and I just hope and pray that someday I can call Alice and thank her for helping me become a mother.
The point: I would like you all, if you can spare some money (even ten dollars!) to donate to Fertile Action instead of my other charity. I am going to stop spreading the news about my OMG 2012 donation site and start pressing people to help Fertile Action instead. I don’t know why I didn’t sooner. You can visit Fertile Action’s website here: http://fertileaction.org/ Alice is currently helping twelve women try to find doctors willing to preserve their fertility. When I needed the Lupron shot, she did her best to try and help me get the cost down. She’s incredible and I want to help her out. If you wish to donate, and I won’t know if you end up doing so, you can do so by clicking here. It takes you directly to the Fertile Action donation page, which is safe and secure.
I know a few people questions whether OMG 2012 was a scam of if the money was going directly to me so I could travel. The answer to both is no. But OMG 2012 has enough sponsorship that they can offer rewards for those who raise money. Alice can’t do that. Somehow, Fertile Action is seen as just unnecessary to some. I get it. Cancer patients should focus on surviving and just be happy they can live. That’s really easy to say when you aren’t a cancer patient who expected to have this entire life ahead of them, including a family. It’s also very easy to say when males tend not to become infertile after chemo. The medical community warns they might, but many do not (even those with testicular cancers) because they are constantly regenerating sperm. Women do not constantly regenerate eggs. We are born with our supply and chemo damages them so badly that they are rendered useless. Things like Lupron shots and egg harvesting are our only hopes of becoming biological mothers after chemo. Just because we had cancer doesn’t mean we should give up the dream of carrying our own child. Please don’t let Fertile Action fade away…and know it is not a scam. I have been helped by Alice and her group. I have spoken to her on her phone, in text, in email. We are Facebook friends. She exists and her group does great things for women like me.
So, if you can find an extra five or ten dollars floating around, please help. Every little bit keeps Fertile Action working.
And it keeps the dream of motherhood alive for women just like me.