New Cold Cap Resources

A fellow cold capper friend and advocate started a great new online support group, Facebook page, and Instagram page. She just featured my story! Such an honor! Join us!

My IG story:

I sat in the lot of the 3rd radiology center that week. It was hard to get out of the car. Before I did, I called my Mom to say, “We have to try. Even though they say it won’t work, we have to try.”

I had spent the previous day at chemo training, genetic testing, and fertility discussions. I came home and broke down completely. After a therapeutic cry, I did a web search for “cold capping.”

I had heard about it through a friend, though she didn’t have specifics. I asked my oncology team about it and was met with curt dismissal. “It doesn’t work,” was the response. “Not for your kind of chemo. Don’t waste your money.” Or the worst, “Focus on getting better, not how you look.”

My web search that night led me to Penguin Cold Caps. I devoured their website and got up to head to that parking lot the next morning for more scans with one thing on my mind…saving my hair.

Having something like cold capping to focus on during chemo was a much-needed distraction. Proving wrong those that tried to dissuade me was also sweetly validating. It worked! I didn’t lose my hair. The privacy I maintained by keeping my hair was like a gold crown. That I could still recognize myself were the jewels in that crown. But, the real majesty of cold capping came afterward.

I began connecting with newly diagnosed women, serving as a rare cold capping success story. I now get to help others defy chemo hair loss. That’s where I found my strength. Educating the world that #itsmorethanhair is how I’m truly healing.

If you’re in the Austin, TX area, please join our local Cold Cap Support Group too!

02 Rachael

Pot isn’t for everyone I realize. I don’t care for the stuff myself after a rather misfortunate bus trip to Nimbin, Austrailia in college. That was before I got cancer.

The physical and (most surprising to me) emotional effects of chemotherapy are severe. Show-stopping, jaw-dropping, hardest-thing-ever severe. You simply cannot imagine the comprehensive trauma of this treatment. It is a wonder they call it a cure at all.

Many of the effects of chemo are strangley non-specific. The literature given to me before I began treatment stated such vague expectations as “feeling generally unwell,” a staggering understatement. While my oncology nurse tries her damnedest to treat my side-effect symptoms with additional medicine, she can’t realistically solve general unwellness. Add acute, sporadic depression, the kind that can only be explained by facing one’s own untimely, unfair, unexpected mortality, and you’ve got quite a puzzling medical conundrum on your hands.

There isn’t a single non-addictive drug available that combats all these things at once successfully except cannabis. Texas legalized CBD oil in 2015* but has not yet legalized medical marijuana use. I’m fortunate, however, to have access to both THC and CBD products, even though my means are not always legal. I feel so, so sorry for patients who do not.

Let me be very clear. I’m not gazing into a lava lamp while listening to Bob Marley, giggling and eating Doritos. I’m sick as fuck. There is no charm in my drug use.

A dear friend recently visited a farm in Oregon where they are growing organic, medical-grade hemp for use in CBD products to treat patients with cancer, alzheimer’s, epilepsy, and other debilitating diseases. She was able to name one of the rows after me. There were lots of tears when I got the photo of this beautiful gift, lots of tears.

I want to invite anyone opposed to the legalization of marijuana to pop in on a person with cancer a few days after chemo treatment or spend just 5 five minutes in the chemo room with me. I want you to look into the face of anyone with cancer or MS or schizophrenia or any other of the terrible diseases and disease treatments that benefit from marijuana use and see that pain. Your mind will be forever changed. As more and more lawmakers do these things (and more and more citizens demand they do), I doubt very much pot will be illegal in Texas for much longer. I hope that both the restriction and the stigma of medical marijuana are soon a thing of the past.

* While CBD is legal in Texas, DPS continues to make it difficult to acquire it, including at People’s Pharmacy where I purchased mine.

Do I Get a Refund?

In an attempt to identify why I developed breast cancer at such a young age, I met with a genetic counselor and decided to undergo what is commonly known as the BRCA1 and BRCA2 hereditary breast and ovarian cancer test. In fact, they tested for 32 different gene mutations that may indicate a predisposition to breast cancer and a variety of other cancers.

I have 2 baby nieces and 2 younger siblings so the decision was easy for me. It was also covered by insurance because of my age. I wanted that information. I believed it could save my life and possibly even save the lives of my family members. To me, having the knowledge, no matter how terrifying, was no question.

But I was appalled to find out that there is such prevalent discrimination against those who move forward with genetic testing and discover a mutation. While I am protected from being dropped by my current insurance company should a mutation be found, I was told legislation does not currently exist to prevent me from being turned away should I attempt to procure a new insurance policy or employer. Changing jobs, starting my own business, even shopping through the Affordable Care Act marketplace could (and likely would) cause me major problems and great expense from an insurance standpoint.

That is bullshit.

The difference between me and any other person who remains untested is simply information. Nothing more and nothing less. Being tested only gives me information about my likelihood of suffering a life-threatening disease. It gives me the chance to do something about it, to make decisions that could save my life or lessen my suffering by being proactive. Mutation information would also help me make immediate decisions about my treatment and ultimate survival chances. Why would anyone want to punish me for getting that information? It is shameful.

It is also unreasonable. While I don’t have certified stats and figures on insurance costs, I believe that acting to prevent catastrophic illness is in both my interest and the insurance companies’. Getting cancer is, I believe, far more expensive than preventing it. In fact, I can attest that I have spent (as has my insurance company) far more since being diagnosed with breast cancer than I ever did prior to on healthcare expenses. The difference is astronomical.

Is it a crap shoot? Sure. But, I believe people should be able, especially in the face of an unusual diagnosis or a strong family history, to collect as much information that will help them as possible and not be discouraged from doing so by fear of discrimination.

So, while I ended up having NEGATIVE test results, I am still disgusted that those that get unfortunate results have the added burden of knowing they will be treated unfairly for the rest of their lives. Simply for having information, these people will suffer twofold.

I hope you’ll join me in advocating for legislative protection of genetic testing privacy and discrimination. You can’t change your genes and you certainly can’t pick and choose the diseases that may result from them. And no one should ever be persecuted for acting in their own (and their family’s) medical interest.

A useful journal article on genetic discrimination:
http://annonc.oxfordjournals.org/content/22/suppl_1/i60.full