Tomorrow, January 21, 2020, will mark one year from when I was officially diagnosed with cancer by an oncologist.
In the year or so following up to my diagnosis I had experienced random symptoms here and there that I attributed to poor diet, lack of sleep, massive stress, no exercise and so on. Beginning around mid September of 2018 my symptoms began to change and become bothersome with the worst of it manifesting in November. I had seen my primary care physician and since she knows I only go see her when it is my annual exam she knew something was up. I read her my list of symptoms I kept track of. She didn’t appear overly concerned but since there were a few symptoms that she didn’t feel comfortable with she thought it best for me to see a specialist and get a colonoscopy and endoscopy done.
When I saw the specialist, he said my symptoms sounded like pelvic floor disorder but wanted to proceed with the colonoscopy and endoscopy anyway just to cover all bases.
On New Year’s Eve 2018 my husband and I went in to have my procedure done. Coming out of anesthesia and getting myself put back together to go home the doctor came in and said I had what looked like a bleeding festering mass in the rectosigmoid junction that appeared to be malignant. I was sent on my way with a referral to a colorectal surgeon and an oncologist. On the way home I looked at my husband and said “hey I know I am still coming out of anesthesia but did the doctor say I had cancer?” and my husband said yes.
So began the surreal experience that was my 2019. My first CT scan was January 3rd. My first colorectal surgeon appointment was January 10th. My first appointment with the oncologist was on January 21st at which time I received my official cancer diagnosis and course of treatment options and outcomes. My second appointment with the colorectal surgeon was the afternoon of that same day. And then an MRI on January 27th and another one on January 29th.
My preop appointment with my surgeon was February 4th. A follow up with my oncologist was February 11th to confirm the surgery was good to go and the best option to start with. I had preadmission testing on February 25th and surgery on the 26th followed by a 5 day hospital stay.
I came out of surgery with a 6 week temporary ileostomy due to the size and location of my tumor. It turned into a 9 month temporary ileostomy on March 11th when I saw my oncologist and he told me that the cancer started to metastasize to my lymph nodes and as a precaution we were going to do 6 months of clean-up chemotherapy starting on April 1st. So on March 19th I went in for an outpatient “port placement” procedure which will be in the next 5 years as long as I remain cancer free.
I picked up some cooties on a cruise I was on in July (that whole compromised immune system thing cancer patients have) and wound up in the hospital again 4 more days. Which was then accompanied by follow up visits with an infectious disease doctor.
However, I passed this whole cancer thing with flying colors. Completed chemo on September 19, 2019. Follow up CT scans on October 30, 2019. Had my ileostomy reversal surgery on November 5, 2019. I was declared N.E.D. (No evidence of disease) on November 12, 2019.
I say all of that to say this…..my journey is not over. The recovery process from an ileostomy reversal has its own set of specialness with an undetermined amount of time for those symptoms and side effects to subside. Yes there is no evidence of cancer in my body. As preventative care I have to go every 4 months for CT scans and to follow up with my oncologist/have my port flushed – this is for two years. Every February I have to get a colonoscopy done – this is for five years. Every August I have to get a sigmoidoscopy done – time for this is undetermined.
All of this stuff I recognize is for my health and well being but in all honesty every piece of it shares the sh*t out of me. I laugh and joke and blow it off but it shakes me down to my core. A friend and I were texting today – she having had her own cancer journey last year – and she asked “I wonder if I’ll always have this little nagging feeling wondering when/if it will come back.” And that is where I am at……cancer can come back at any time in any form or not come back at all. I follow the doctors’ orders on my follow ups and the rest is up to me – diet, hydration, exercise, stress management, adequate sleep, self care. This is what my life is now. The cancer may be gone but my journey is still in the starting phases.
So I beg you – when you have a family, friend, acquaintance that you know is battling or is in remission from cancer – learn what you can about the disease and their diagnosis and treatment- ask the patient flat out “what does that all mean” or “how can I help you or your family”. You don’t have to know what to say or know all the answers. Sometime just knowing people are there if they need it is just enough. Also, remember their caregivers and their kids. They are going through it too in their own way and need just as much support as the patient.
This never ending cancer journey takes a village.