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What Now? The First Step on a Journey of Healing

The last two months have been the most difficult of my life. But they have also been some of the most important months of my life: so revealing, so meaningful, so centering. There is a tremendous amount to say. I have learned more and experienced more than I could ever put into words. For now, however, I am going to make this post a pretty straightforward update about treatment options since there is a lot explain. Andrew and I and our family and friends have been on an extremely difficult journey but we have settled in a place that is about as hopeful as we can get given the circumstances.

So here are the nitty gritty details: On January 4th I found a lump above my supraclavicular lymph node on the right side. I then proceeded to get an ultrasound, a biopsy and a PET scan, which all confirmed that I had a recurrence of breast cancer in my lymph node. PET scans are one of the best ways to detect cancer in the body because it shows any part of the body that is quickly metabolizing glucose and cancer loves itself some sugar. The PET scan I had revealed that the cancer has, fortunately, not spread to any other part of my body. However, there is an extremely high chance that I have micro-metastases, which means there are microscopic cancer cells just waiting to take hold in other parts of my body and two other lymph nodes in my chest and armpit also showed some low levels of metabolic activity so there could already be cancer there.

This recurrence has meant that I have had to face down an entirely new reality. First, this cancer is even more aggressive than we originally thought. Because it survived 20 rounds of 6 different kinds of chemo it means that my cancer is multi-drug resistant and more chemo would, at best, extend my life a few months. Because it recurred in a place that has already been radiated it is also considered radiation-resistant so more radiation to that area is unlikely to be helpful. I could have it surgically removed, which would be considered a local treatment, but that wouldn’t do anything to treat those micro-metastases that are likely lurking elsewhere.

Conventional medicine loves to talk about “standard of care.” The “standard” is the treatment option that has gone through the most trials, has the most data to back it up and will probably be helpful to the largest majority of patients. The problem is that the “standard of care” for breast cancer was developed based on the “standard” breast cancer patient: a post-menopausal woman over the age of 60 with hormone positive cancer. I am a pre-menopausal, 30-something woman with hormone negative cancer. I am not the standard patient so it is not that shocking that the standard treatments didn’t work for me.

Unlike my first diagnosis where there were very clear steps to take: chemo, surgery, radiation, it has been obvious from the get-go that there is no clear treatment for me. My medical oncologist thought we should treat it locally by surgically removing it and keep our fingers crossed that it hasn’t already spread elsewhere. My radiation oncologist and my surgeon oncologist disagreed and thought we shouldn’t take a “keep our fingers crossed” approach but instead either start chemo to try and keep it and any micro-metastases stable or try to get into a clinical trial for a newer more targeted therapy that might be more effective than chemo.

With these completely conflicting ideas it seemed that the next logical step was to talk to all of the nation’s very best doctors. My purpose in getting so many second opinions was originally to see if a consensus emerged about the best way forward. However, it ended up serving very different purposes. I learned a tremendous amount about cancer, treatment options and how the whole medical system works. And I discovered that even as a consensus was emerging that each doctor had their own reasoning and rationale, their own attitudes about my situation, and their own disposition. Hearing from all of them allowed me to conceptualize and think about my cancer from a myriad of different perspectives.

In the end we got opinions from each of the following institutions: Georgetown, Sibley/Johns Hopkins, Dana Farber, Mass Gen, University of Chicago, Cleveland Clinic, University of North Carolina, MD Anderson, Mayo and Sloan Kettering. My journey included 16 flights to 7 cities to speak with a dozen doctors. I’ll spare you all of the details and just explain the general sentiment that emerged.

First, my prognosis is not good. No one tried to predict how many months or years I have left but statistically speaking my chances of living another 5 years is pretty slim. Because this recurrence is in the lymph node near my original tumor it is considered a regional recurrence, which is not as bad as a recurrence in one of my organs which would be Stage 4. My stage is technically Stage 3C. However, it became clear that most doctors feel like the difference between Stage 3C and 4 is really a matter of semantics and that it is only a matter of time before the cancer shows up some place else making it Stage 4. Because triple negative breast cancer is considered so aggressive and because it is particularly aggressive in young women most of what I have read as far as statistics go has given me about 13 months left to live. I had lots of doctors tell me to “enjoy these days while you still feel well,” to remember to consider “quality of life” when making treatment decisions and that “we aren’t looking for a cure here but we want to focus on lengthening your life.”

Second, there isn’t a whole lot that conventional medicine can do for me at this point. Most doctors agree that chemo is unlikely to do a whole lot for me and they all agree that there is no chance it would “cure” me. Radiation would also probably not work very well. Surgery could get rid of this lump but it would do little to prevent the cancer from spreading. The only option I was left with from most of their perspectives was getting into a clinical trial.

Third, clinical trials are a tricky business. Let me just briefly break down the history of breast cancer treatments. Back in the day there was just BREAST CANCER and it was all the same and it was all treated the same. Eventually they figured out that some breast cancer responded to hormones (estrogen and progesterone) and some did not so then there was hormone positive and hormone negative breast cancers with targeted treatments for the hormone positive cancers. Then we discovered a protein called HER2 and realized some breast cancer had receptors for HER2 and some did not. So now there was hormone positive, HER2 and triple negative breast cancers. With hormones and HER2 they had something to target, with triple negative there was nothing. With triple negative breast cancer I fall into the “nothing to target” category. However, the science is starting to catch up and they have already realized that there are probably about 6 sub-types of triple negative breast cancer and they are just now developing more targeted treatments based on those sub-types. So there is promising stuff on the horizon.

However, we haven’t gotten it all totally figured out. The science is tricky and even when someone has tons of receptors targeting those receptors doesn’t always work. Additionally, trials fall into Phase I, II and III. Phase I is all about dosing and figuring out how much of a drug you can give someone before it becomes so toxic it kills them… basically. Phase II is figuring out if that drug actually works and Phase III is proving to the FDA that the drug is good enough to get their stamp of approval. Most of the trials that are testing these new targeted therapies are still Phase I, which is not meant to cure anybody. Additionally, I can’t get into trials for this new promising group of treatments called “immunotherapies” because I have an auto-immune disease, despite the fact that it would be unlikely to interfere (it’s just how the protocols are written). And finally, none of this even really matters right now because my tumor is technically too small to qualify for any trial at all. The vast majority of trials require “measurable disease” and the standard for measurable disease in a lymph node is that the shortest diameter is 1 cm and mine is .5 cm. (The need to have measurable disease is yet another reason to argue against surgically removing the tumor.)

Therefore, the recommendation of most doctors was to “wait for it to grow.” I got information on a small handful of trials happening across the country for whenever the time came that my tumor got big enough to qualify me for the trial. In the meantime, they had little else to offer me.

I just wanted to take a brief time out to say that somewhere in the midst of gathering all of this information I came to a conclusion: I am going to heal. Unlike my last cancer journey, which was one of utter destruction and deep physical and emotional trauma, this cancer journey will be one of healing. I am going to heal my body, in the best ways I know how: by integrating the healthiest diet I can muster, the best complementary and alternative treatments I can get my hands on and the best that Western medicine will let me access. I am not going to let myself be poisoned for no good reason. I am also not going to be able to thrive unless I heal my mind and my spirit as well. I have been forced to welcome in a fear like no other I have known before and in order to cope I have had to seek peace in my own body and in my own brain. Mindfulness, meditation and yoga have become my medicine. I know that I will die… we all will… but I feel less afraid knowing that from now until my death, whether that it’s 1, 5 or 50 years, I will be on a journey of healing.

After we were done talking to all the best doctor’s conventional medicine had to offer we visited one more, someone who lives a little outside of the convention. His name is Dr. Raymond Chang and he started in conventional medicine but has been running his own practice for several decades. He came very highly recommended by my other cancer friends facing terminal diagnoses. After hearing a dozen doctors tell me that there were no treatments for me, Dr. Chang immediately said that there were, in reality, a ton of treatments I could try and that I might even have a shot at “curing” this cancer. He offered me what he and others call a “cocktail approach” to fighting cancer. The philosophy is pretty straightforward.

  1. Cancer is the result of failures along multiple pathways- your immune system fails to kill the cancer, your metabolism feeds the cancer, your body allows blood vessels to grow to nurture the cancer and your genes drive its continued growth. In order to stop cancer you need to attack all of those pathways all at once. Conventional medicine is obsessed with a single-agent approach which comes from a clinical trial mindset. Test one thing, see if it works. If it doesn’t, try another. This is good for science but bad for the patient, especially for the patient for whom few things actually work. Really, really well performing cancer treatments have about 30% success rates, and often success is defined as “doesn’t progress,” not a “cure.” Why not throw together 10 drugs that all have a 30% chance of working to increase your odds?
  2. Base all treatments on science. Nothing is prescribed that hasn’t gone through Phase 3 or at least multiple Phase 2 trials. The patient is not a guinea pig for toxicity here, they are only prescribing scientifically proven treatments.
  3. Do no harm. All doctors subscribe to this but in this situation it actually means that they don’t prescribe anything that would be too toxic to the body. If we truly believe, for example, that our immune systems have an important role in fighting cancer, then let’s not give ourselves chemo that fights cancer in one way but destroys the immune system in the process.

I have done my due diligence when it comes to conventional medicine and decided that this more unconventional approach is my only real option. I am still working out my exact treatment plan but I go back to New York in a few days to determine how I am going to move forward. I truly, truly feel that this is my very best chance and really my only hope. In my wildest dreams this will keep me alive for a very long time and something besides this cancer will eventually kill me.  In my most down to earth moments I have hope that this will give me a few more good years to be with my husband, my family and my friends. But no matter what I know I will heal and I will find peace.

So what now? Well, as you might imagine, working outside of conventional medicine is not cheap. In fact, it’s incredibly expensive. My doctor visits alone are expensive but he works hard to try and get as much of my medicine covered as possible. Some of it, however, is only available overseas or insurance simply can’t cover it. We are still sorting out exactly how much it will cost as we are unsure which treatments we will try, in what order we might try them and how many years I may have to be on them. Right now we are looking at expenses somewhere between $75,000 and $250,000 over the next few years. The more funds we have the more treatments I’ll have access to.

I wish I had won the lottery at some point and had this kind of money stashed away somewhere but unfortunately I am not a secret millionaire. This means that once again Andrew and I will be relying on your incredible generosity. During my first treatment your kindness was completely overwhelming. My support network took unbelievably good care of Andrew and I and you all helped us raise enough money to cover all of our out-of-pocket expenses. Since my recurrence you all have helped us save thousands of dollars by booking us flights with your miles to see all of these doctors and you have generously donated to our cause which has helped us offset the thousands we’ve spent already on this journey towards healing.

In my last blog I quoted Jon Kabat-Zinn who said, “At the deepest level, there is no giver, no gift, and no recipient…only the universe rearranging itself.” Basically I am in need of some serious rearranging. If you feel so inspired I would be forever grateful for any assistance in whatever form you can provide it in helping me rearrange the universe.

Here are a few ways that you can support us and Katie’s Crush Cancer Fund right now:

  1. Donate to our GiveForward campaign and/or share the campaign with your friends and family: So much of my network has already donated so generously to this campaign, some of you more than once. We have been overwhelmed by your generosity. So overwhelmed that we have upped the ante and hope that maybe you can help us out by sharing it with other friends who might be able to support us. Every dollar counts and every contribution is deeply, deeply appreciated.
  2. Buy our art: Andrew and I have finally pulled together some of our favorite pieces, either prints I’ve designed or paintings Andrew has painted. All the proceeds will go towards our health expenses.
  3. Represent the Cancer Crushing family: I know many of you already purchased your “Crush Cancer” tees but in case you missed it the first time around or would like a Crush Cancer sweatshirt or tote to match your tee you can check those out at the link. All of the proceeds will be going towards my medical expenses. (And don’t forget to share photos so I can add them to our page!).
  4. Grab your favorite baby a onesie: I started designing these state-centric onesies when all my friends started having babies. Hence forth any and all profits will support my medical expenses.
  5. Share any and all fundraising ideas: If you have a fundraising idea that you want to run with or if you want to send one my way please let me know. We can use any and all of the assistance, brilliant ideas and opportunities we can get! I have a few ideas myself that I will let you all know about in the coming months. Feel free to go to the Contact page if you want to reach out to me directly!

I just want to thank you all so much for being so kind and so generous. One of the greatest blessings of this journey has been to be a witness and humble recipient of the spirit of generosity that you all possess. It is my sincerest hope that I may someday repay the incredible kindness I have been shown and can be a participant in rearranging the universe for someone else.

All my love,

Katie