On 5/23 my dad and I headed back to Duke for the start of my follow up chemo. It was a really long day since my first appointment started at 7am. That meant waking up at 5:30 to leave my aunt and uncle's house at 6ish. And again, I can't say enough about how thankful I am that they are so kind and generous to welcome us into their home throughout this adventure. Driving up the night before makes it a little easier. And it's always great to see them. We went out for ice cream after dinner to this cute little soft serve ice cream stand in Cary. Very popular neighborhood joint, and tasty :)
Grabbed breakfast and coffee on the ride to Duke, and we were still late. We're never on time, but that's my life. First up, labs. Nothing new, didn't wait long to get called back, blood draw was easy. Next up, Radiology for my CT scan. A bit of a wait but after getting called back, it went pretty quickly. By the time I was checked in to see my oncologist, we were an hour or so ahead of the schedule. And the waiting began. Didn't find out until later that we were waiting for my CT scan results. Who knew the results could come back so quickly!
Preliminary results were all clear - great news! They actually called me later that day to confirm that the final results were all clear too, since there was a small chance that they could find something later. How cool is that? And, I'm 2 months cancer free - 58 to go!
Dr. Zafar and I talked about these next steps and how long I need to do the follow up chemo. He said that there aren't any studies on Stage 4 Colon Cancer patients, so the best info they can use is about Stage 3 patients. Oh, and get this - of the people that have Stage 4 Colon Cancer that has spread to the liver, only 15-20% are eligible for the surgery to remove the tumors from the liver. Of them, only 30-50% are cancer free after 5 years (this will be me). The other 50-70% have recurrences. Could you imagine having a recurrence after 4.5 years? 6 months to go before you're considered cured (well, it's technically that you have the same change of getting cancer again as someone that has never had cancer, so that's considered cured). But still, cancer is so random.
Anyway, of the 50-70% that have recurrences, not all of them had follow up chemo after the liver surgery. So that also shows the lack of data in my area. And then you throw in my age, and how abnormal it is for someone of my grand youth to get this type of cancer, and you might as well start throwing darts for statistics. Basically, there are no statistics, good or bad, so it's all a clean slate for me to create :) So let's do this!
I decided to change my chemo treatment and switch out the Xeloda pills for the 5fu infusion IV. What that means is, instead of taking pills for two weeks, with a one week break between sessions, I will have an IV of chemo hooked up to me after my treatment at Duke. I will take this IV home with me and it will dispense over 46 hours. Then a home nurse will come to my place and disconnect me. And this will happen every two weeks, instead of every three weeks. Oh Joy!
I had two months of chemo before my liver resection surgery, and I need 4 months follow up chemo for a total of 6 months. Studies have shown that more than 6 months has no beneficial effect. But less than 6 months has a less beneficial effect. So that's the sweet spot (even though stats don't apply to me, but when you have nothing to go on, you gotta go with something apparently). 4 months of chemo, with treatments every two weeks is 8 treatments left.
After the doc, we checked into the clinic and then waited a good while. Once I was called back, we started with the normal Zofran IV for nausea, but then I didn't get my Calcium Magnesium. Nurses couldn't tell me why, but they confirmed that I wasn't supposed to get it. So that decreased my clinic time by an hour - woohoo! We might get home at a decent hour!
The Oxaliplatin chemo IV was no different than other times (got in a couple good naps in those 2 hours), and then the infusion nurse came in and hooked me up to the take-home IV. It's a ball a little larger than the palm of my hand. It was pressurized to dispense the liquid over 46 hours and it came with a bag to wear over my shoulder. Ugliest bag ever, I should get something more stylish but it's not like I'm gonna leave the house much with that sucker. I could care less...cancer gives you perspective.
They gave me this box-o-supplies. Saline and Heparin for the home nurse to flush my chest port. A toxic chemical disposal container. And a chemo spill kit. Get this - the chemo spill kit is basically a hazmat suit. So if anything spills, I put it on before cleaning the spill. This is what is going into my body. Seriously...seriously???
And then we went home. Actually felt ok to go out for dinner with my parents. I was pretty wiped out all day Friday and Saturday. And then there was the drama of the home nurse. It's Memorial Day weekend, and I need a nurse to come at 2pm on Saturday. The infusion clinic has set up a local service to attend to me, and at 4:55pm on Friday they cancel. So the infusion service is frantically trying to find someone to fill in. They ask if I can meet someone in Greensboro, which is half way to Duke (1.5 hours) - hell no, I'm not getting in a car. They ask if I know someone that would be comfortable disconnecting and flushing my port. Uh, no, I don't know anyone in the medical field, and no, we are not walking my dad through this over the phone. In the end, one of the nurses from Duke drove all the way here on Memorial Day weekend to take care of me. These cancer people are awesome (it's those hospital people that sucked!) Crisis averted.
I went out for breakfast on Sunday with the rents, and then we drove around the Vineyards at Lake Wylie where they are building their house! Can't wait for them to be in their own house again (and sell Tryon!). And then I crashed again. Monday was a wash too, and thank god it was Memorial Day. Side effects weren't too bad. Massive fatigue over the long weekend, and some nausea. Bad headache, and cold aversion for several days. Minor neuropathy in hands and feet.
One down, seven to go...next appointment is on June 6th (which has passed, but I'm catching up on the blog. Oh, and I forgot to tell you about my trip to Paris - it was awesome - more soon!)
Love to all,
Sarah
xoxo
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