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.

macrobowl

Delicious macro bowl

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.

This is what I looked like during my nap yesterday.

This is a much cuter version of what I looked like during my nap yesterday.

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.

Charlotteandgifts

Charlotte inspecting my care package.

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.

Drawings received, including a health care companion.

Drawings received, including a health care companion.

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.

Me and my wizard cat.

Me and my wizard cat.

As much as I’m not looking forward to the likelihood of another bout with cancer, I have plenty of better things ahead.

Comments

  1. Renn says:

    Ok so it’s obvious I read blogs oldest to newest! Your pity party is abs-so-f-ing warranted! Every day all day!

    The problem with having health problems is that you cannot run away and escape from them. They follow us like a hungry dog (or even a not-hungry dog!). All other life life problems are escapable, albeit briefly. Fed up with your spouse? Exit stage left. Fed up with your boss? Exit stage right. Hate your furniture? Set it out on the curb. Bored with your earring collection? Give it away. It’s easy to start anew with everything but cancer.

    Physical health issues are simply not physically avoidable. We can fly to Paris on our credit card even if we don’t have money; but when we’ve got cancer or recovering from surgery, there is literally no where to run. The only escape is via the brain. And I don’t know about you, but I find it harder than ever to escape the boiling thoughts that go on up there.

    Which leaves us with bloody few options. Denial works well for me (as does Xanax). If you haven’t already, talk to your doc about pharmaceutical options to get you through the next couple of months. I married a pharmacist so perhaps I’m biased, but meds are there to help us bridge tha gap from illness to better health.

    PS Venting is part of the beauty of the blogosphere; there is always someone, somewhere, who can relate and is thankful you took the time to write. About your problems. I know I am .🐾🐾 😎

    • apainintheneck says:

      Exactly! I couldn’t have said it better! Thankfully, I have the blog so I can vent about how I feel. For escaping, I have some summer plans to look forward to and plenty of books!

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