Today, I went to the doctor and got the staples removed from my belly. I joked that they would have a staple remover, like you have in an office (or had—who uses staples anymore?), but that’s pretty much what it was like. The nurse practitioner removed the staples and put some butterfly bandages on there for the next week or so. She also assured me that I wouldn’t burst open, which is my illogical worry. (Even with her reassurance, I know it will be months before I can move without half-expecting to pop open.)
As alarming as it was on Friday night to wake up with a big sticky spot on my T-shirt from my leaking incision, the leak was normal and seemed to stop. It was apparently just fluid that had collected under the skin and seeped out. The good news is that I am on track and healing nicely.
I still have weeks of recovery ahead. Sometimes I still find myself doubled over in gastrointestinal distress. Getting my digestive system back on track is tough. One of the doctors said that some patients find the gas/digestive pain to be worse than the incision pain. I still have very little appetite, and it’s tough to be motivated to eat when you know it could mean cramps and misery later. Still, my boyfriend is making me plenty of good food. A friend stopped over this past weekend to bring me a macro bowl she made full of good, healthy ingredients (including black rice, quinoa, avocado, asparagus, chickpeas, carrots, kale, mushrooms, carrot ginger dressing) and some vegan cinnamon ice cream. I can eat only little bits of food for now, and it takes about 6–8 weeks for the appetite fully to return, I am told.
Some days I stay up all day long, like this past Sunday, and other days, like yesterday, I rest my eyes for a bit and sleep the afternoon away.
We had a chance to ask the doctor about the neuroendocrine tumor coming back. The odds aren’t encouraging. There’s more than a 50 percent chance that I’ll get another neuroendocrine tumor within the next five years, probably in my liver. They are going to monitor me fairly closely. Once it comes back, there are a variety of treatments: medication, chemo, or burning the tumor out. I have a follow-up with my doctor in a month, and I’m also meeting with a neuroendocrine tumor specialist that day.
It’s not the greatest news that I’ll basically be waiting for this tumor to reappear over the next five years. I know some people will say that I should focus on the chance that it might not come back, but please allow me to indulge my pessimist within and point out that, according to the odds, my Hodgkin’s lymphoma should have gone away with six months of chemo, I shouldn’t have had two types of cancer at the same time, and neuroendocrine tumors themselves aren’t all that common. We also asked why, after hanging around for years, the tumor became aggressive all of the sudden, and there’s really no answer to that. These neuroendocrine tumors sound tricky.
In the meantime, I just need to focus on recovering from the Whipple procedure. In the future, I’ll have to figure out how to live with the threat of the cancer returning—specifically how to prepare for its possible return without letting it cast too big of a shadow over my life. I’ll also have to really sit down and take a hard look at the long-term effects cancer is going to have on my life, from finances to long-term goals that just might not be possible anymore. I don’t think I can pretend like I can go back to “normal” or at least the way things were before. This last scan gave me the all-clear as far as Hodgkin’s lymphoma was concerned, but this new neuroendocrine tumor info makes me think it’s time to make a new plan.
When I wrote my last post, I was feeling pretty low. I didn’t want to deal with cancer anymore. Sometimes, when you put your head down and go through something like an illness, you want a break. You just want a few days off from being sick. Most often, you can’t take a break. Yet, in a certain sense, I did get a break. I had a year “off” from cancer in between my stem cell transplant recovery and my first pancreatitis attack. I’m glad I had that year to really enjoy myself and not worry too much about cancer’s return. I’m going to be getting some time off again, though I can’t say for how long. (Maybe forever if I’m feeling optimistic.) It will give me time to build up some strength and, of course, enjoy some cancer-free living. We have a fun summer planned.
After my last post, I was reminded how lucky I really am and how my pity party was unwarranted. I received so many nice and supportive notes and thoughtful messages. I’ve been receiving cards and visitors this week and weekend and my boyfriend’s family even made me a goofy video to cheer me up. Just this past week, I received an orchid and I got a package from my co-workers full of fun stuff, including a cat lady activity book, a bell to ring to summon my boyfriend and an inflatable wizard hat for the cats to wear. Now that the bell and the hat are out of the packages, my boyfriend and cats seem less enthused by them, but I am delighted. I have had a lot of snuggle time with the kittens.
As much as I’m not looking forward to the likelihood of another bout with cancer, I have plenty of better things ahead.