It's hard to write this, to ask for support. What I am most comfortable with, and my very nature is to serve and help others who are suffering and in need. I consider myself very lucky in so many ways, yet here I am in the balance. I need support so I can rest and give my body a fighting chance to heal. I also need to pursue some options that insurance just won't cover.
My story starts with the diagnoses of Breast Cancer five years ago. As most single parents of three children, I have a lot on my plate. The financial and physical burdens of being a good parent and uphold a career as a Chiropractor with a practice alone was enough. When you get a diagnosis of any life-altering disease it feels like a death sentence. Fortunately, after tons of love and a very supportive community I managed to get through a lumpectomy, chemotherapy, and hysterectomy. I also was lucky enough to access many other healing treatments from numerous healers and doctors while keeping my practice open. I really never rested except in clips when recovering from surgeries.
The doctors wanted to remove both breasts and do radiation as well as prescribe a drug called tamoxifen. Against their recommendations, I instinctually refused radiation, kept my breasts and refused any more medicine. I changed my diet, attempted to remove any toxic exposure, and did everything I could think of to lower my risk of getting breast cancer back. Somehow I was able to survive and thrive as a person and professionally as a Chiropractor, keeping my head just above water financially.
I thought I was in the clear and looked forward to moving ahead in my life and practice with confidence, hope and new found spiritual outlook. I started traveling and taking the time to hone my craft with educational seminars. I built my new practice in Red Hook. I met the best Man in the world. I was finally living life with reverence and passion, a life I always wanted.
About a year and a half after Chemo treatment, I started noticing that I was having a hard time breathing any time I walked up steps. I started having difficulty getting through my day efficiently, dropping into bed early yet unable to get a good night sleep. Thinking I needed to exercise more, lose weight, manage my stress better, I blamed myself for not being more dedicated to my health. Yet, in the back of my head I knew something wasn't right. People were starting to notice I was having trouble breathing even though I did my best to cover it up.
One day during a moderate hike, a good friend made mention that she could see I was having difficulty catching my breath and although I did my best to justify it, I couldn't hide it from her. She is a nurse and knew me well. She insisted I see a doctor as soon as possible. I made the appointment with my oncologist, hoping and praying it wasn't lung cancer. He immediately sent me for a full work up suspecting blood clots or heart failure. What we found out was much worse: It was Pulmonary Hypertension. The Cardiologist and GP made light of it, even though my symptoms increased and my quality of life went down. I continued to follow their advice by taking more drugs, attempting to lose weight and manage my stress better. Yet my blood pressure continued to climb higher.
Now, if you know me at all you would know how strong-willed and determined I am. What I had been doing was a winning formula for me for most my life. The “I can do it” mental state that got me so far was now working against me. The doctors were having a hard time catching that I was so sick and I was in denial about it as well. My good friend, the nurse, insisted I needed to see a specialist and reminded me I had a history of blood clots. It was possible I was clotting again and it was going to my lungs chronically. It took almost two and a half years from the time I got the diagnosis for PH from the Cardiologist to see the specialist who could actually confirm it with a right-heart catheterization (the gold standard for diagnosis of PH). After seeing the extent of the damage to my lungs from a VQ scan and RHC he soon realized my case was way beyond his scope. He sent me to the top doctor in Boston specializing in the type of PH I have. The Boston specialist confirmed I have Chronic Thromboembolic Pulmonary Hypertension, CTEPH.
Only 3% of the population gets this type of PH. Because of that, most of my current doctors just had no idea how to help me manage it. This is a progressive disease that does not get better with weight loss, exercise and stress management. The faster it gets addressed, the longer the life span. This is a rare and progressive condition caused by chronic blood clotting which goes to your lungs and never dissolves. It builds up in the arteries of the lungs eventually causing right heart failure. If undiagnosed, the lifespan for someone who has this is three years. Many are not as lucky as me because it is so rare and doctors do not even consider it as a possible diagnoses.
The next year will be the most critical for me and my family. I have many challenges ahead. We will need to travel bimonthly to see the specialist at Massachusetts General in Boston for a series of procedures that will hopefully work. In my last visit in November the specialist found that the pulmonary pressure in my lungs was too high to do the procedure without killing me. They have put me on numerous invasive drugs (that cost the price of a cheap new car every month). These drugs have many side effects, but are needed in order to lower the pressure in my lungs and hopefully then attempt the procedure again. Ive had to go against my values and idealism in order for me to comply and take these drugs but in the end it assures me the opportunity to attemt the proccedure again. In six weeks after being consistent with the drugs, they will go through the blocked arteries in my lungs with a stent.
Based on the extensive damage, it will take up to eight procedures over the course of this next year. I was told by the doctors that I am in critical condition, even though I don't look it. They were amazed at how I managed to rally through it. They recommended I file for disability. I cried for a week straight after hearing that. How could this be happening? This was definitely not the plan. I would like to say "I got this", like I always do, but the reality is I don't. It's not just about me pushing hard through a limitation. It’s more about me learning how to surrender, rest and allow my body to heal. I'm seeing the stress in my partner’s face. I feel the fear of losing me from my kids and my community. I am afraid, too.
It is hard for me to rest because of my concern about losing my chiropractic practice or worse, my identity. Not being able to contribute financially to my family is also a huge stresser. My partner has lovingly and willingly offered financial support of me and my kids, but this is a huge burden I feel is not fair to put on him alone. I have a lot to learn about how to truly love and take care of myself but I fear I am running out of time if I don't ask for help and start to believe I deserve the support. I need to rest and heal. I need to recreate a life in which I will thrive and function well with the limitations I will continue to have. I will have to learn to take it slow. Not one of my strong points.
I calculated the cost of living for me and the kids for one year. I also included alternative healing options for me, and what it will cost to modify and continue my chiropractic work. You will see these expenses reflected in the total amount requested. I will stay positive and in gratitude.
With your help I look forward to being able to continue to have the fullest life possible. Any excess funds will go towards a fund that provides care for others who are going through a trauma or chronic illness and need access to complementary care. In the worst case scenario, all proceeds will go to my children in the event of my death. I thank you for your support and love.
For any one who wants to learn more about this disease here is one link.
- Suzanne Cahill
- Ron van Beek
- Marc Adelman
- Susan Byrnes-Kritzberg
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