Treatment plan

The treatment plan proposed by Dana Farber was 4 rounds of every-other-week chemo, followed by 6 weeks of daily radiation with continuous 5-FU infusion, then major abdominal surgery to remove a large chunk of my colon and rectum along with the surrounding lymph tissue, then 8-12 more rounds of chemo, for a total of 10-12 months of treatment. And the radiation will destroy my uterus, so I will never be able to get pregnant at the end of all of this.

The timing of our visits to the infertility specialists worked out perfectly, almost ridiculously so. I had gone off my hormonal birth control as soon as we'd heard that I was going to be infertile, because I knew I wanted to try to squeeze in an IVF cycle if at all possible. After the big pow-wow with all the doctors on Wednesday, we had an appointment with the MGH infertility folks that Friday and they were able to a baseline ultrasound and apply for coverage with our insurance. It turns out that we have the only insurance in Massachusetts that covers IVF before cancer treatment (since I'm not technically infertile at the time of treatment), so that was a bit of luck, since the drugs alone are over $7,000.

We went away for the long weekend to a B&B in New Hampshire, and I got my period on Sunday, much to my surprise! We had an appointment with the Dana Farber infertility specialist the following Tuesday (since Monday was a holiday), and because everything was already in place, she was able to start me on hormones that very day. I even got my first injection in her office. Had my period not started exactly when it did, or our appointment been a day later we couldn't have used that cycle, and my oncologist wasn't willing to wait another month before starting chemo. So we were extraordinarily lucky on that one!! For the next 14 days, my wonderful husband gave me an injection every morning, and for the last 8 or 10 days I got another one in the evening. Somewhere in there I had surgery to install my port-a-cath in my shoulder, but it was entirely minor day surgery. Just made my left arm sore for several days.

Starting on day 8, I had to go in to the hospital every morning for blood work and an ultrasound so they could monitor how my eggs were developing. They took patients from 7:30-8:30, but you really needed to be there by 6:30 if you wanted to make it home before rush hour. So those were some really early mornings. Greg went with me to the first one, but it was so early and so mundane that he skipped the majority of the rest. He still had to get up at the crack of dawn, though, to give me my morning injection (since he typically left for work before I would get back from the hospital).

And then, less than two weeks after we started the hormones, they scheduled my egg retrieval for Sunday, the day before my first round of chemo. My retrieval was scheduled for Sunday at noon, so Friday at exactly midnight, Greg had to give me an IM hCG injection into my butt, which was less than fun. At least all my other injections were sub-q (nice 1/2" needs), rather than the giant 4" IM needles. Apparently the eggs are released exactly 36 hours after you get the hCG, so the timing is really important. And then, off to pre-op on Sunday morning with Greg. They put me under, so I don't really remember much after arriving and changing into a gown. But they got 14 eggs, which turned into 8 fertilized embryos, who are frozen and waiting for us once all of this is over!

In the beginning

Friday the 13th, May, 2011; a day that will live in infamy for me and my family. Friday the 13th was the day of my colonoscopy to make sure that the blood in my stool was just hemorrhoids and nothing else. The prep was not fun - having to drink a gallon of salty, rotten tasting nuclear laxative - and I commented to my husband Greg walking in that I couldn't imagine doing this if the chance of cancer was in any way real.

I'm a healthy 30 year old, and while I've often had digestion issues (chronic diarrhea and such), at no point had anyone suggested I might have cancer. The odds of a healthy 30 yr old developing colon cancer are somewhere between 1 in 500,000 and 1 in 2.2 million, depending on your source. My gastroenterologist said that he thought the worst case would be colitis. But when I woke up from anesthesia, I could tell I was passing lots of blood, which I'd read was a sign that biopsies had been taken (turns out he took 17 biopsies, so no wonder there was lots of blood).

Nearly an hour after I came out of anesthesia, the GI doc came in and told me that he had found a large tumor, obscuring roughly half of the diameter of my bowel. I immediately burst into tears and Greg had to sit down - we were not in any way prepared for that outcome. He said it could be cancerous, but that I would absolutely need surgery either way, so the cancer diagnosis wouldn't really change anything about the treatment, since he thought it was just a superficial tumor that would be treated with surgery regardless.

That weekend we tried to occupy ourselves as best we could waiting for the biopsy results, which came back as cancer Monday evening. I had been expecting it to be cancer, but early stage, so while that was distressing, it wasn't entirely surprising. Tuesday, we put out the word to all of our colleagues and friends and were very lucky that we have friends who have contacts in both MGH (Mass General Hospital) and Dana Farber Cancer Institute here in Boston. I had a CT scan scheduled for that Thursday, and an appointment on Friday with the team at MGH, and another appointment the following Wednesday with the team at Dana Farber.

The first appointment with the MGH team (one week after the colonoscopy) was encouraging - the CT scan showed no sign of spread to other organs (phew!) and they seemed very confident that they could cure the cancer, and were hopeful that they might be able to treat it with surgery alone, or at least without radiation. But the CT wasn't really clear enough, so they wanted an MRI, which was scheduled for Tuesday. So we had another restless, uncertain weekend waiting to get the MRI results.

Wednesday (now a week and a half after the colonoscopy) we had the first appointment with Dana Farber in the morning and then another appointment with the MGH team in the afternoon. The Dana Farber folks said it was for sure Stage III cancer that had grown through the wall of my colon and into "enough" lymph nodes. And that while they would love to be able to preserve my fertility, odds were very high (95%+) that I would need radiation, which would make it impossible for me to bear children. So their plan was 2 months of chemo, followed by moving my ovaries back behind my kidneys to avoid frying them with radiation (and thus causing menopause), then 6 weeks of daily radiation, then surgery, and finally another 6 months of chemo. Up until that point we had been thinking that even worst case I would be done by Christmas, but their plan was 10-12 months! And no babies. We had just decided to start trying to get pregnant in the next month less than a week before the initial diagnosis, so learning that I would never be pregnant was crushing.

Unfortunately, the MGH folks weren't any more cheerful. They agreed it was Advanced Stage III and that it would not be possible to preserve my fertility. Their plan was to start with the radiation, then surgery, and then all the chemo at the end. So the only difference was the 2 months of chemo on the front end. But they made an appointment with the IVF clinic for that Friday (two weeks after the colonoscopy), to start talking about egg harvesting and embryo banking, in the hopes that we could find a surrogate to carry children for us.