Alice's Survivor Story

How do I describe my journey through a cancer diagnosis, a rare cancer at that?

April 6, 2007:  It wasn’t quite a normal day.  Surgery isn’t normal.  My gyn decided  that a hysterectomy was appropriate to determine the cause of abnormal bleeding, and a fibroid, that on MRI didn’t look like the others.  We knew, at 55, that I was done having kids.  Cancer markers for ovarian and uterine cancer were normal, so we expected this to be a “routine” hysterectomy.  He even agreed to do it under spinal anesthesia, as I was very scared of general anesthesia.  I was very calm going into surgery, expecting nothing more than a sore belly when I came out.

 I didn’t remember much about the surgery – something mentioned about my appendix, but the sedation, while allowing me to talk with the doctor throughout, eradicated most memories of the event.  I felt fine in the recovery room, and was chatting nonchalantly with the nurses, though was surprised that my husband, Seth, wasn’t allowed in to see me there, as I’d been told he would be.   My world had changed, but I didn’t yet know it.

 On arriving at my room after leaving the recovery room, Seth and my doctor came in together.  Dr. C told me that he’d found cancer, that my ovary was encompassed by a massive tumor that had originated in my appendix. I started screaming, crying, anything to get me to awaken from this nightmare. They quickly moved me to a private room. Seth later told me that Dr. C was shaking when he came out of the OR to talk to him, obviously distraught.  I also learned from his staff that his wife had told them that he went home and cried.  He couldn’t believe what he had found, and he believed my prognosis to be poor.  My hysterectomy was expanded to be a TAH-BSO with omenectomy under the guidance of a GI surgical oncologist that Dr. C called in.

 Diagnosis: “mucinous adenocarcinoma of appendiceal origin with metastases to the ovary and omentum, and peritoneal seeding, Stage 4.”

 Shock.  Disbelief.  Someone wake me up.  Where is my world?  What is my world?  What is reality?  This can’t be happening.  I’m too young.  I’m going to die.  What do I do?  Where do I go?  I’m going to die and everyone will see that my house is a mess!  (Yes, the unimportant thoughts take up too much energy!)  And on and on.  Life in the Twilight Zone.  Days were bad, but nights were awful.  As soon as the lights went off, my head would start spinning.

 Consults – I needed to travel to experts for consults.  My local oncologist, at a major medical center, had no references for this rare cancer.

 After meeting with 3 different experts with 3 different approaches, I chose the one that made the most sense to me relating to what I was told about the specifics of my tumor type: laparoscopic surgery to ensure all cancer had been removed, and placement of a belly port for subsequent intra-peritoneal chemo (not heated).  This might be followed with possibly systemic chemo.  I had time, and didn’t need to race into anything.

 So 4 months after my initial surgery, I had my “look-see and port-placement surgery”.  More cancer was found, though all 30 lymph nodes were clear; surgery became major, and my anticipated 4 days in the hospital exceeded the “worst case scenario” assumption of 10 days by almost triple.  28 days in the hospital with numerous complications: my gut wouldn’t resume functioning (ileus) for 3 weeks, major incisional infection, pneumonia.  NG-tubes, catheters, in, out, in again.  More tests.  Start eating.  Then nothing by mouth for several weeks.  Would the problems never cease?  Would I get home?At long last, I did get home, and was scheduled for my second of a planned 8 cycles of IP chemo.  I’d had the first cycle 48 hours after surgery, while still in the hospital.   At my first post—hospital round, more complications, in that I was experiencing pain that greatly exceeded anything the nurses had seen before.  We learned that I had to have the chemo with a narcotic pain meds drip started before in order to tolerate something that shouldn’t have made me feel more than bloated. Narcotics were continued 5 days post-treatment (Note – I gave birth to 2 children with no need for pain meds – my tolerance is very high.)  Still, after 5 of the 8 cycles, the doctors decided that the risk of damage, as indicated by my ever-increasing pain level exceeded the benefit, and IP was discontinued.

 Belly port was removed without a hitch (yay!); chest port was placed, and more rare complications from the port kept in the hospital overnight to get it replaced the next day, resulting in much more pain from that procedure than the norm (and a much bigger scar).

 During systemic chemo, which was done at my home medical center, I hit even more bumps in the road, and kept wondering when things would finally go smoothly. My side effects were the rarest; ones that you aren’t told about.  In addition, for my first round,  a nursing error resulted in me getting a massive overdose of chemo, based on someone more than 50% heavier than I.

 Subsequently, I had 7 of a planned 12 rounds of systemic chemo, as the side effects were too severe for me in this as well. Since all of my drs agreed that the systemic chemo was of questionable value in my specific case, but was a “best guess scenario”, I decided that the known problems were not worth the unknown possible benefits.

 By the time I stopped chemo, I could barely walk.  My hands and feet were bleeding, I had had an anal fissure from the chemo that I was told would not

heal until I stopped chemo (o, the pain!)  I had major neuropathies.  I felt lousy, and wondered if I would ever feel human again.

 Yes, getting through chemo was incredibly difficult.  But I did it.  I’m told by others, by doctors, that I handled it unusually well.  Somehow, we manage to draw on strengths we may not know that we have.  If you had told me 5 years ago that I would get through all of this, I would have insisted that you were crazy.  I learned a lot about myself during this experience, and the self-understanding continues.

  Fast-forward almost 2 years since stopping chemo (3 years since diagnosis):  I bicycle, kayak, curl (on ice.)  I travel, work, play.  I do what I can to show other cancer patients that there is “the other side” and that after all of the suffering from treatment, you can resume life.  I’m living a “normal life”.  Most of the side effects have subsided.  None of the residual ones impact my life significantly.

 I still have some neuropathy issues. My feet hurt a bit, and my fingers tingle.  I am hyper-sensitive to sound.  I’ve gained a lot of weight with the changes to my metabolism. I have CAT scans every 6 months, blood tests every 3 months.  I will need more surgery to repair some incisional hernias that developed.  But overall, I’m doing very well.  I’m living a normal life, where cancer is in the background, ever present, but not constantly looming.

 And now I move forward.  In a few weeks, I’ll learn if I’ll be having more surgery this spring to repair resultant incisional hernias, and take another look around as long as there is a “window of opportunity.” Surgery should be straight-forward, but with me, so far, nothing has been that way. Dreading the knife, but we do what we have to do.  Just before I see the doctors, I have a colonoscopy (will they find anything?) and a CT scan.  I’ll get crazy for a couple of weeks (“scanxiety”), but I’m comfortable with my medical team, and know that we can get me through whatever is next.

Before that, I have a big curling competition (the Grand Nationals Senior Mixed Championships – seniors is over 55).  I’ve just come back from a few days snorkeling in the Caribbean.  My bicycle and kayak are waiting for me.  There’s a family wedding coming up, and a family birth.  Life goes on, and I’m in the thick of it!  My kids grow and flourish as independent young adults.  I’m planning to be here for a long time. 

 Cancer will always be part of my life.  However, it is no longer omnipresent; a constant shadow of the sword of Damocles.  It’s something in the background that I hope to have remain in the background until such time as we need to address it again.  And I’m sure I will be facing active cancer again.  But right now, I have too much life to live to spend it worried about the future.

 Yes, there is life after cancer.  And yes, we do survive.