Click here to read part one.
Unbeknownst to me at the time, my cancer journey was far from over.
I got through the treatment, the surgeries, and more treatment — that went on until July 2015. It was rough for my entire family, but we made it, a bit tattered and worn from the emotional and physical battle, but we made it. The cancer was gone, or as the doctor says, “in remission”. We could now get back to living our lives.
Except for a little blood test that begged for more information, so another PET scan was ordered. It was probably nothing, but best to make sure. I did not panic, I kept it together. Surely this will be nothing. Right? It is absolutely impossible for me to have more cancer. Friggin’ impossible. Right?
My family and I were nervous waiting for the results of that scan. When we finally got the phone call, the doctor uncomfortably said, “I am sorry. There are three new spots on your liver”. He sounded as shocked as we felt.
We had had only a 30 day reprieve from all the terror that we had just gone through. Of course I was thinking that this wasn’t fair, that it just couldn’t be. But it was.
October, again, was the month of doom. My birthday again was marked by surgeries, and talks of heavy-duty chemo, and blah, blah, blah. I suddenly hated the month of October.
We were very lucky to be privy to excellent medical advice and resources. My partner, who is a get-shit-done person, started making the necessary phone calls for the much-needed introductions to world class doctors that would be able to deal with what had become Stage IV Rectal cancer. I was feeling the pressure, people. There isn’t a stage five. To say this was a do-or-die situation, well, even I cannot make that joke….
We had intense discussions with many doctors. Through a family friend, we were introduced to a surgeon in New York at Memorial Sloan Kettering who is an expert in hepatic arterial infusion pump placement. Along with him came the world-famous oncologist who has been offering an old but controversial treatment for approximately 25 years.
Soon I was off to NYC for my meeting with Dr. Kemeny and her team. We met her on October 7th and scheduled my liver resection with liver pump placement for October 9th. The surgery was a big one that required a 5-night stay at Memorial and two full weeks away from my son. By far, this would be my longest period away from him (by like 13 days).
I don’t remember much after the surgery, but the few days I had before the surgery were spent with my father-in-law walking hours through Central Park. I had such a nice time I honestly forgot I was having major surgery in less than 48 hours. I am forever grateful for those long walks. Those hours spent in the park provided me with a beautiful and scenic diversion from what would have been an otherwise extremely stressful and frightening time.
Going through that surgery and coming home with a pump inside my body the size of a hockey puck was awful, but considering the alternative, I was relatively happy and pain pills kept me comfortable.
The next steps were to start systemic chemo – chemo that would be sent to every cell in my body to wipe out any unseen tiny cancer cells. This required the surgical installation of another port into my body. I felt like the bionic woman. There is something very disconcerting about having stuff taken out of your body that is supposed to be there, and having stuff put into your body that isn’t. I still have a hard time reconciling this but being a compliant patient, I do what needs to be done. Once in a while, it bothers me, but I do try my best to deal with it.
There is a saying in the oncology world that if cancer doesn’t kill you, the treatments will. Even though I had a relatively easy time with treatment, I have to say that this is true. Chemotherapy sucks the energy out of you. You feel tired in a way that is downright frightening.
My chemo treatment would be for three days, every two weeks, for twelve cycles (6 months). I received this treatment at Northwestern Memorial Hospital here in Chicago. I would go there and sit in a chair for a few hours to get the chemo infusion and then go home with a backpack that would continue pumping chemo into my port for the next two days. Numbness and tingling in my hands and feet, sensitivity to cold, all side effects of treatment, were very annoying.
In addition to getting systemic chemo every two weeks, I traveled from Chicago to NYC every month to get chemo delivered directly to my liver through my liver pump. This pump may take my 5 year survival rate from 25% to nearly 78%. Because rectal cancer reoccurs in the liver, this pump delivery system of chemo is used to attack just the cells in the liver. Its side effects are few unless you count liver toxicity. That is a very real risk. I had to stop treatment after 4 of the 6 scheduled treatments because my liver enzymes were too high.
Traveling to NYC every month was sometimes difficult, but all-in-all, very doable. I decided to make those trips to Sloan Kettering by myself for a couple of reasons. First of all, it made me feel like I wasn’t sick. I was traveling by myself, walking to my appointments, exploring New York and its sidewalks filled with people. I just slipped into the scene like a normal person. No one knew me, therefore no one knew I was “sick.” I felt independent and strong.
That monthly trip also provided me with space to gather my feelings about what was going on with me. It was during that time that I could be alone and not have to put on a strong face if I didn’t want to. No one was there to protect me from my occasional feelings of depression and fear, but most importantly I didn’t have to protect anyone from my feelings either. I could just “be”.
It is now March of 2018. I am happy to say that I made it through all that hell. I have been in remission for over 2 years. On Valentine’s Day, I got rid of the chemo port in my chest (close to my heart hence the removal on Valentine’s Day), but the liver pump remains. In case.
After all is said and done, cancer has given me more than it has taken. It has given me life lessons that I am not sure my stubborn self would have listened to without the fear and the urgency that comes with being sick. People say to me all the time, “but I could get hit by a bus”. Yes, you could. But you are not standing in front of that proverbial bus every day. I am constantly reminded of the frailty of life with my follow up protocols: 3 month CT scans, 6-month cystoscopies, blood work, pump fills, doctor visits, and trips to NYC. With each of these reminders I face the possibility of hearing, “I am sorry Jill, the cancer is back”. Again.
And when and if those words are spoken to me, I will continue to fight. Plain and simple.
Until then, I will gratefully continue to do the following: Find peace and joy in each day, watch my son grow up, spend time with the people I love, help my patients, laugh at the absurdity of life, look up at the moon and the stars (I really do this– a lot), notice the leaves on the trees when they begin to turn, take long walks, lift weights at the gym, hide food from my chubby, chocolate lab, watch the first snowfall with glee and delight, put gifts under the tree, watch heartwarming videos of people and animals, notice the first snowdrops blooming in spring, and take bike rides along Lake Michigan in summer. And sometimes– enjoy a vanilla ice cream cone dipped in chocolate. Real ice cream, not frozen yogurt!