Sunday, December 21, 2014

What's up now

I've been feeling better! It's so so so awesome to be able to do things! Like put on my own socks, or drive myself to the grocery store and walk around almost normal! (Or build that bookcase with Derek!) It's incredible! As soon as Derek and I found out I had Crohn's we changed our diet, and have seen incredible improvements!

IT IS SO WONDERFUL TO NOT FEEL MISERABLE

I can't even just say how happy I am. Now, things are not perfect, and there still are days where I lie in bed most of the day. But I'm in pain considerably much less. I've become more flexible, my bowel movements are less painful than they used to be (because the open wounds from surgeries are finally starting to heal, rather than just bleeding and tearing all the time), but I still have pain in my gut (because I think I'm still a little inflamed and dealing with those ulcers in my colon).

I've been eating more, and for the first time in 4 months I maintained weight!!! Every doctor's visit I would weigh in and be a little less than the last time. But, since changing our diet and continuing to that the medicine the doctor prescribed, I have had an increase in appetite, and not lost weight (I'm keeping things strong at 88 lbs. right now). Miracles, answers to prayers, and a testimony that nutrition is SO IMPORTANT. I'll talk more about what we eat in another post.

So we met with our doctor/surgeon last week. He took a look and announced that my bum was indeed starting to heal! There is still an opening/cut that is still draining blood and pus (I've been wearing pads for three months straight now because of this). But it is healing. And he said I looked healthier, not as pale. Yes! Even though I still am very-ery pale, I have a healthier glow than I did in October and November.

I'll go back to visit him the first week of January, at which point we will probably proceed to preparing for chemo if I am continuing to heal up in my bum. Finally we can move forward! And here's what I mean when I say move forward:

  • Colonoscopy round 2 to check on ulcers and inflammation
  • Meet with gastroenterologist to check-up on my Crohn's and talk about how chemo could affect things
  • Meet with hematologist (cancer doctor) to check up on where we are and how I'm doing.
  • CT/PET scan to check on cancer growth. We think I'm still in stage 2, but we will find out for sure
  • Port surgery so that I don't have to get an IV for chemo every 15 days
  • Chemotherapy!
Woo! We are just excited to move forward with all this and get me well again!

And I'm so glad that I feel mostly well just in time for my family to come visit me from Virginia for Christmas and the New Year! LIFE IS WONDERFUL

And Ishel is a goof.


Friday, December 5, 2014

Birthday recap and health update

Thank you all so much for the birthday love and well-wishes! It was a marvelous day, and every few hours I would turn to Derek and just revel: "I am so loved. Wow."

The day started with breakfast in bed, then a trip to the doctor, a trip to the health food store (so much fun and health!), and an afternoon with Derek and Ishel, plus Indian food for dinner, and visits from grandparents and parents-in-law. The multitude of text messages, Facebook posts, emails and phone calls was overwhelmingly wonderful, and I'm so thankful and full of love!

With a gift from Ishel:


Birthday lunch crafted by Derek:


So the most unusual present that I received was some news from the doctor. But before I share that, here's my health update: I haven't started chemo yet. Following the two surgeries in my bum, I was still not healing (which means it was painful to poop always), so three weeks ago my doctor suggested we get a colonoscopy to see if there was something else causing problems further up. Unfortunately, because my bum was so cut up from all the surgeries, prepping for the colonoscopy was the least fun thing I've had to do possibly ever. I had to take a bunch of laxatives and not eat in order to clear out my whole colon, and pooping out blue liquid gatorade all night isn't exactly my idea of fun... Yeah, but the colonoscopy was great because they just knocked me out. The results (drumroll please) were that we found some ulcers and inflammation and little pus bubbles in my colon, which is why it was so hard for my bum to heal up! 

My body is fighting cancer, digestive troubles, and trying to heal up bum cuts. Whew! So I'm taking more drugs to help reduce inflammation around those ulcers in my colon (which includes taking an enema every night, which is definitely my least favorite part of the day, though I am getting used to it, bless Derek's heart). 

Now to the birthday doctor visit. We chatted with our PA for an hour about my symptoms and the results of the colonoscopy, and it is likely that I also have Crohn's disease. 

If you're not familiar with Crohn's, it is an inflammatory bowel disease that can affect your digestive system anywhere from your mouth to your bum. Right now I'm have those ulcers in my sigmoid (the last part of your colon before your rectum) and some inflammation or something around my lower esophageal sphincter (in my chest). Derek and I are still learning about everything, but I'll write more about that (like what dietary changes we are making!) in another post. 

Though this isn't the best news to get right now, one huge blessing is that my Hodgkin's lymphoma is still stage 2, and not growing incredibly fast. Because the cancer isn't spreading quickly we have the time to let my body heal from the bum surgeries and will be able to figure out how to soothe my inflamed insides before starting chemotherapy. Things are gonna be oooookay!