My cancer journey started back in mid-2013. It has asked me to give up and change so much in my life, it has introduced me and my family to experiences and ideas we did not expect. It continues to do this. However the one thing that has been my single focus, remains strong as ever....this is my wish to see my children grow up and to be their mother in every possible way. Another day, another week, another year. I want it more than anything else.
As much as I wish to write about hopeful things and talk about how lucky I am to still be alive after 4.5 yrs living with stage 4 cancer. How happy I am to be with my husband, children, family, and friends and how thrilled I am that after everything I've been through my body still moves and is relatively strong. I can't stop thinking about and trying to process all of the upsetting and bad news that my doctors have given me over the last few weeks.
It is difficult for me to talk about all of this in person and repeatedly, so I've written this post to update you. I'm not saying that I don't want to talk about my cancer with friends and family or want to pretend it's not happening. I am not interested in hiding my story from anyone who may care or who I might be able to help through my own experience. So please feel free to email me directly or to pass this blog link on to other friends and family who would like an update. I'm just being honest that sometimes, it is hard for me to talk about and the blog helps me say it and share it, all in one place.
No matter what, please know that I am deeply thankful in advance for all of your support....now and over the past few years. I am always glad to hear from any or all of you. If you send a kind email or card or donation by paypal or in the mail.....know that my heart bursts with appreciation. If I don't respond by email or facebook in a timely manner, please know that I'll be in touch as soon as I can. Things can get crazy juggling lots of doc appts with various treatment side-effects and a husband+2 kids to hug all the time.
OK now for the short and the long story.....choose your own adventure.
The short story is that since late October 2017 my disease went into overdrive and started progressing quickly. In November I went back on a strong type of chemo that has worked for me in the past. However the lab results and scans from late December showed that my cancer has now developed resistance to that chemo.
Several of my oncologists have recently told me that there are no longer good or reliable options for controlling my cancer. So I am in a rather frantic search for clinical trials that I can qualify for and I am begging all of my doctors to work with me as much as possible, even when that means grasping at straws and thinking outside the box (sometimes, way outside the box).
It usually takes 4-16 weeks to search/sort, get registered, and to start a clinical trial. During this time, if left untreated, my cancer will continue to do damage pushing me closer to the end game. So in the mean time, me and my family decided that I must try to do something to slow down the disease in hopes of buying time and helping me feel better (the symptoms of the progressing disease are not pleasant).
So I've started some experimental treatments and medicines from my integrative MD and my chinese med doc. I'm getting regular labs done to track whether it is helping. We are trying to remain hopeful while still very focused on finding more powerful meds through clinical trials.
These treatments are significant out of pocket expenses to the tune of several thousand per week as our insurance does not cover treatments that are not performed in the hospital. And once a clinical trial is found, there will be more out of pocket procedures, travel and possibly lengthy stays out of town will be required.
In the coming weeks, my family & friends will be putting together some fundraisers for me and my family. Once we know more details of the current and upcoming financial need, we will let everyone know about online crowdfunding campaigns or events. In the mean time, if you have the means to help financially or know someone who does, please visit the section at the top of this blog "How can you help"? to get info on how to donate.
For those interested. The longer, more detailed story is as follows.
This is year 5 living with this disease. I have already outlived most of the predictions but still, I want more. During this time, I have been in cancer treatment continuously. No remission, no "NED" (no evidence of disease", maybe some brief weeks or a month or 2 of stable disease. No chance to take a break from some kind of treatment. I am tired. I need a break. I want "my life" back. Instead I wake every morning and do my best to renew and tend the heart fire that will pull me through another day.
I did not choose this path. I had other plans. Since my diagnosis I've let go piece by piece, most of those plans and dreams. In their place, I've developed new hopes and possibilities that are less tied to any ideas of certainty or future. Yet these mean no less to me than the former. I am not doing this hard work for myself. It's about something bigger.
In the midst of all of this treatment and frustration, I have lived well and happily. I have been given the gifts of seeing so many milestones in my children's and family's lives achieved. Babies born, science fair projects made, goals scored, raises obtained, retirements and weddings celebrated, and marvelous travels experienced. I have made many new friends and lost touch with many old friends. Life has gone on. Every new springtime that I have seen since my diagnosis has thrilled me no less and maybe more than I thought possible. Every moment I have appreciated deeply. I have suffered, I have grieved, I have been in awe, I have been thrilled. I have let go. I have held tight.
For the sake of clarity and so there is no confusion, I will be blunt here. This is difficult to put into writing but I want my friends, neighbors, and family to know where I'm at with this and what is going on. The next few months will be really challenging and scarey as I try to pull through a dangerous progression in my disease.
It's hard for me to repeatedly explain my status and the situation on a one on one basis because it is very upsetting and pushes me to focus on something that makes me sad and not the fact that I am have a conversation with someone who is special to me. Also my condition and where I am at with various medicines or treatments is constantly, sometimes suddenly changing based on lab results and exams. It is too hard for me to keep everyone updated on a regular basis. No matter what though, you can trust, for the forseeable future, I will be in some sort of treatment.
I currently have numerous tumors in my lungs, at least one in my left hip bone, and several in my liver with my liver function being increasing challenged by the growing tumor burden. I am incredibly lucky that as of now there is no sign of disease in my brain or spinal cord. The tumors in my lungs are slow growing and for now, not affecting my breathing but they do increase my susceptibility to infection. The tumor in my hip bone is a problem as it will eventually affect walking and cause pain so I am now receiving a series of radiation treatments to my hip. The tumors in my liver are the most dangerous and the fastest growing. These are the tumors that sap the life of cancer patients and that kill. These are the tumors that must be controlled in order for me to live longer.
Blood test results and CT scans from mid December show that since October 2017, my disease has progressed quickly, likely due to the development of resistance to the few chemotherapy drugs that have been most effective for me over the years. This also comes after 2 experimental treatments that I received in March-May 2017, including a clinical trial with a newly developed immunotherapy drug and internal radiation via radioactive microspheres that were injected directly into my liver tissue.
I currently have several different clinicians that I see on a regular basis including, a radiation and medical oncology team at Univ of Mich, another radiation and oncology team in Nashville TN, an integrative & holistic MD in Ann Arbor with oncology resources, and a Traditional Chinese Medicine doctor based in Ann Arbor and China with oncology resources. I also have relationships or connections to with clinicians who specialize in using experimental drugs and clinical trials. Also the genetics and genomics (the unique fingerprint) of my very own cancer has been sequenced and analyzed thoroughly. It has revealed numerous mutations and other signatures but none of these are what the doctors call "actionable targets" meaning that currently there are no drugs available or known to block or reverse one or more of "my" cancer's mutations.
A lack of doctors and specialists is not my problem. The problem is that once a cancer patient becomes resistant to 1st, 2nd, or 3rd line chemo options and once the function of key organs in the body are affected, there are few options to keep the cancer from growing and killing. The much discussed options of clinical trials are wonderful in theory however in reality they are very difficult to qualify for and can take weeks to months to get registered and then actually receive a drug. This does not work when the patient only has weeks to months to live. And all of this is assuming that the patient can even find a clinical trial at some hospital, somewhere that is testing drugs or procedures that have a reasonable chance for working for their cancer.
Today there exists a variety of options to kill mine and other people's advanced cancers. This includes experimental drugs, combinations of new drugs and procedures, cancer-killing viruses, and hand-made personalized fighting immune cells. Some of this is still in research labs, some only tested in cells or animals, some in human clinical trials, some being tried for one cancer and not another. It is possible that one, and more likely, a combination of these new things could help me. It is possible, maybe even probable that there are drugs and procedures being used in other countries that could help me. But how do I do this? How do I get access to drugs & treatments that the FDA says I can not have? How do I find the right oncologist who is creative and daring and able to work with me to devise a drug combination that might work, and then "got to bat" for me to convince the researchers and other clinicians to take a chance? How do I pay for the drugs, procedures, housing, and travel?
Even if I could figure all of this out.....the biggest question I ask myself is how can I trade all of the time it takes to do this for the loss of that same time with my children? My 2 boys (now 6 and 11yrs) are the shining stars of my life. My dharma, my reason for breath. So how can I spend time and focus on anything else?
It would make sense to trade 4 weeks in a far-away hospital if I am receiving a life saving drug or procedure, maybe those 4 weeks are the 1st 4 weeks of the rest of my life as a healthier woman. BUT on the other hand those 4 weeks could be 4 weeks of the last 16 weeks of my life.....I can not know ahead of time if it is 1 or the other. How does one decide something like this?
In spite of my disease and everything that it has taken from me and everything that it has taught me and shown me. I know that I AM NOT DONE. I have so much more to do. I have surfed these waves and rolled with the punches. When one opportunity became blocked from me, I found another. I am determined to keep this up. As my disease has progressed and the number of different treatments I have received has increased, more and more of the clinicians and practitioners have begun turning away, saying that there is little or nothing that they can offer me. So now I am on a hunt for doctors who are willing to take chances with special patients. I am one of those special patients...I am strong and I still have energy and hope and so much will to live. But the process of finding these few doctors in a world of naysayers is not easy. And I must do it quickly because the cancer is ever marching forward, blind to what I want and blind to my search for help.
I want to celebrate my childrens' and my family's and my friends' achievements and special occasions. I want to plan exciting vacations and small adventures to keep spirits up during the gray winter and early spring. I want to organize a dinner party or a brunch and invite people whose smiling faces, I miss seeing more often. I want to arrange workshops about happy things like self care and essential oils. I want to say "yes" I can teach that class, and "yes" I can pay that registration fee for a yoga training. And "yes" I have time to work on the books I am writing, and "yes" I can finish that online class I started 4 months ago....and "yes" that retail space for rent on Ashley St. looks like the perfect place for the Align Botanica shop, the one that me and my sisters and mom and husband have been dreaming of. The one that will be filled with green plants, the smell of tea and candles, and welcoming customers to hope and possibility and discovery of more wellness in their lives.
That is a lot of "wanting".....and I've always been very good at transferring "wants" into "do's" and getting things done. Moving forward, jumping hurdles, diving into projects and relationships, fully engaging with people and life.
Yet, for now, today I must concentrate instead on the "needs" not the wants. I need to continue to call my doctors, leave messages that may or may not be returned, send half-crazed, half-rational emails to clinicians I have never met and to researchers who may never read the email. I need to haul my self to another radiation treatment and then acupuncture and then maybe a stop at the integrative med doc for something or a blood draw at a local lab then come home and take more than a handful of pills, and somehow ignore the fatigue and not crawl into bed because I have kids to pick-up from school and dinner to make and people to hug. I need to search google and clinicaltrials.gov and try to sort through all of the studies, read the ways that the clinicians will need to control and parse drug access, learn what small indecencies and bigger tortures will be required, then scan the eligibility requirements, then breathlessly read the disqualifying requirements....holding my breath, hoping I don't see something that automatically blocks me from even considering the proposed treatment.
Today, I need to look into my mother's eyes. I'll see a kind of desperation reflected back at me. Is it my own or hers? Does it matter? We are both locked in this. Tonight I need to look into the eyes of my husband and partner. I'll see desperation there too, and loss, and fear, and desire....desire for what we've had, what we could have had, what we both wish we had. It is so bittersweet. We are so thrilled with our life in some ways but so much of the joy and possibility has been sapped by what is happening.
Today, I need to kiss, hug, squeeze, and smell my children. Inhaling their scent, feeling the vibrancy of their young, soft, lively bodies. Their crazy morning hair, one kid looking like a young Robert Smith from the band the Cure, with a kind of wild, ferocity pumping through his veins begging me to let him stay home from school, and the other kid just coming out of the shower looking like some kind of wet floppy puppy version of Pig Pen from Charlie Brown. How I love them both so much. So very very much. How I want so desperately to see this sight every morning and to watch it evolve as they get older. Will they embrace their inner fire or shy away from it? Will they feed off the flames or simply stand by and watch it burn?
Send me prayers and good vibes. Take a moment to find thanks for your own beautiful life. Take a deep breath and feel the suffering in your own body mixing with the joy of being able to take another breath. Close your eyes and try to remember the last grand sunrise you saw, the pinks and purples, reds, and oranges, mixing and shifting into grays and blues, yellow and mist. Let a gentle smile come onto your face and soften and relax your forehead and your jaw.
This is life. It is a wonder.
