I never would have been able to write this post 6 years ago when I was first diagnosed with a desmoid tumor because I had no idea what I was getting into. It has been a journey. I would not change my experience as it has shaped me into who I am today. If I can help someone else starting out, here is what I now know about being diagnosed with a chronic disease, whether cancer or thyroid (as I’ve used the same advice with my hypothyroidism) or another chronic illness, I needed the same advice for all the Dx’s I have heard.
What I wish I knew then, that I know now:
This is going to be a scary journey and there will be many moments that you are going to feel very alone. It is confusing and you will feel inadequate. Most likely, you will not know what your diagnosis means (for a while – maybe forever) or what to do. That’s normal. You will learn what you need to over time. You will learn from reading, you will learn from googling, you will learn from friends and family in the medical field, you will learn from survivors and support groups and those that can say “me too” – you’ll mostly learn from them. You’ll learn from your doctors.
The truth is, you are never alone and you are not inadequate. You have all you need, always.
It will be a lot of new feelings, new information, new experiences. Take it one day at a time. One day will be great and one will be so horrible. Trust the process, the highs and lows, and accept both days. Accept that you are right where you’re supposed to be at all times.
It is going to take a lot longer than you think. You will have these crazy ideas that you are going to just solider through and you need things to get back to normal – now. Not true. This is going to take a while. The surgery recovery, the right dose of that medicine, that pain pill, the balance of your body back, the emotional healing. It is going to take time. Good news is, you have the rest of your life, sweet child. The truth is, life is forever changed. (And that is not always bad.)
The truth is, taking your time actually can make the process shorter.
Don’t start your treatment until you are ready. It doesn’t matter if the doctor is the “best rated” most “qualified” or the specialist that your trusted family doctor (that has known you forever) sent you to, if YOU do not feel comfortable, if it does not feel right, wait. Find another opinion. Move forward when you know, in your gut, it is right. Pushing forward too soon just causes a lot of emotional and potentially physical challenges in the future. Trust that the right doctor will come because they will.
Take the support and love you get from friends, family, co-workers. It will come gushing at first, when everyone finds out you are experiencing this, and be a bit overwhelming. Say thanks and take your alone time as you need it, but lean on those people when you start going through treatment and when you get low and when you get scared and when you think you just can’t do it anymore. Don’t sit alone for one minute and think you are wrong or bad or can’t do this. Reach out and email, call, text your friends. Seriously, do it. They love you and they will make you feel so much better. Remember, you are not alone.
Create a team. You need more than your doctor or specialist. This is a journey. Mind, body, spirit – all involved. The sooner you realize how spiritual healing is, the better. There are so many people who can support your journey. I wish I knew this from the start (although I may not have engaged the idea at first). I learned. Here are some of the players you might want to include. I did:
Naturopathic ND’s can make vitamin and supplement recommendations based on deficiencies and symptoms, as well as give diet and lifestyle recommendations. Different ND’s focus on different things. I personally go to Dr. Ian Bier in NH http://www.humannaturenaturalhealth.com/Dr-Bier
Imagery Coach Guided imagery can help prepare you for surgery through visualization and meditation. It can also help calm nerves, anxiety and help you see the process in a new way. My life changed with Bob S. at http://www.theinwardeye.com
Nutritionist/Health Coach – If your ND does not help you get your diet right, go to a functional nutritionist. They will help. I love Sue R at Roselle Healing in VA: http://rosellecare.com
Physical Therapist/Personal Trainer – I have used both and they have been invaluable to getting me strong and minimizing/eliminating my pain. I did not know how to move right in my body post-surgery. Moving was all new and I over compensated when I ran, sat, walked, drove. It caused me a lot of pain. These folks get it right. It’s hard to find a good one, but make sure you interview and don’t settle.
Life Coach – Sick or well, life coaching has helped my life so much. My coach has helped me create meaning, drive me towards my dreams and give me focus and guidance instead of living in regret of hang ups or bad habits. They helped me re-tell my cancer story into a powerful one. They helped me change jobs when I realized that life was so much more after my diagnosis. They lead me to heal relationships with friends and family. They helped me clean up so many bad traits. I highly recommend http://www.handelgroup.com Life changers.
Acupuncture – If you have pain, acupuncture can work wonders. If you have digestive problems, sleep problems, emotional problems, pretty much any problem, acupuncture works. My go-to is in Philly and she has been so hard to replace with my move south. If in Philly, I recommend Kara at http://www.healingwithease.net
You can find all of the above practitioners close to you. If you want to know how comment or message me and I’ll share. I’m a pro at finding doctors. Seriously, its my job.
Most importantly….
It is all spiritual. I heard this when I first started this journey, but had no idea what that meant and wasn’t ready to engage religion, which is what I thought spirituality meant. Through my journey I have found a religion that I believe in. That might not be the answer to you right now, but I highly recommend accepting that this is spiritual. It’s all spiritual. This was a journey for me, I had to start just understanding that what was going on was bigger than me, that I could trust in guidance, that I knew there were connections and ah-ha’s that were happening that did not make sense. I began to engage the unknown and slowly God began to reveal Himself to me, slowly I began to understand this “greater than me,” and, gratefully, I began to build this powerful relationship. I started by just praying and praying and praying (having no idea what that meant) and then I started getting answers. My suggestion – just open up, talk to that “greater than you” feeling you might get (that is called praying) and you’ll begin to get response. Repeat when you don’t think you are hearing whispers or repeat if you never think you hear anything or have no idea what I am talking about. You will.
Mom and I in the hospital after my second surgery in 2008.
I wish I’d knew how much cancer was going to grow and change me when I started. It has been the most challenging days of my life and some of the most brilliant. I have soared and I have crumpled into a crying ball. I would not change it because I can’t. I wish I would have known that when I started – that the big beautiful mess of this journey would be my journey and it would help me find myself and heal beyond anything I knew I needed healing of.
In health and healing,
Sera Fiana
Sera Fiana 