Guts (but not the Aggro Crag kind)

To start off, if you grew up in the early 90’s you may enjoy the beautiful ‘Guts’ reference in the above title. If you do not fall into that category, the ‘Aggro Crag’ was the coveted trophy awarded to the 1st place winner of the Nickelodeon show ‘Guts’. BEHOLD:

If you think this post is about that beautiful, green, glowing piece of greatness, it’s not. It’s about actual guts, my guts. Sorry…

I’ll understand if you decide to stop reading here.

For those of you that don’t care about 90’s pop culture references, let’s carry on shall we?

Today I visited my gastroenterologist, Dr. Fayek. Since before the bowel obstruction there has been talk of me having a colonoscopy due to thickening of the colon seen on January’s CT scan. My doctors are unsure as to what this means but the Boston doctors would like me to have the colonoscopy as a precaution as it has been seen that the study drug can cause colitis (inflammation of the colon).

It has been a few weeks since I was discharged from the hospital for the bowel obstruction so the consult was for Dr. Fayek to examine me and see if I was in good shape to follow through with the colonoscopy. After feeling my abdomen she said that she still felt some distention and was very concerned about performing a colonoscopy.

In the event that my guts are still jacked up and she were to perform a colonoscopy it could be dangerous. The result could be possibly triggering another bowel obstruction or perforation (which is super scary and could lead to surgery/infection/extreme unpleasantness). In order to perform a colonoscopy your doctor pumps air into your colon in order for the camera to get a comprehensive view (fun right? you suckers should have stopped reading when I told you to).

The colonoscopy is scheduled for Friday, March 13th at Women and Infants but we will have another consult before that to determine if it is safe or not. Dr. Fayek consulted with Dr. Robison and they both tend to agree that it may not be the best time for this kind of procedure.

I am appreciative that Dr. Fayek is erring on the side of caution and being very conservative when weighing the cost/benefit of this procedure. Ever since the FIRST surgery in December 2012, my intestines have never been quite right. Who would have thought that cutting them in half and sewing them back together would make them angry? Is there such a thing as colon-karma? Hmm…

As details unfold about the fate of this procedure, I shall let you know.

In other news…

1.) I’ve been back on the trial for a couple weeks now. It still makes me feel crummy and I still hate it. I am due for a CT scan in April and will weigh out my options at that time. For now I’m working on incorporating some more holistic/healthy practices into my life, abstaining from alcohol (wahhh wine, I still love you), eating VERY well thanks to the generosity of many, and sweating it out in hot yoga/beasting it weight training with Matt. All of this helps, I just need to keep the momentum going to maintain healthy behaviors.

2.) I’ve been receiving a boat-load of extra help lately. Thank you for everyone that has signed up/cooked a meal for me through the CaringBridge page or sent a donation through Young & Brave or otherwise 🙂 Between my cousins alone, I think I have enough individually portioned, healthy, tasty freezer meals to last me another month! (Sara and Teri, you seriously need to quit your jobs and go into business!).

Additionally, I have received many thoughtful gifts, cards, and treats that melt my heart. These acts of kindness resonate with me deeply.

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THANK-YOU!

Love & gratitude 🙂

Snow & Chemo

To all of my friends in the New England- I hope that you are surviving the insane amount of snow that has come our way. On behalf of us all, I have taken it upon myself to send Punxsutawney Phil a strongly worded letter in regard to this “6 more weeks of winter” bullshit.

I am sitting at home on our 4th snow day in two weeks. I’m a bit torn as I really could use the extra rest and down time but at the same time it is hard to get back into a routine when I haven’t yet had a full week of work since before my last hospitalization. I guess I’ll just stick with not complaining since my landlord takes care of snow removal and I am left to binge watch Crimes of the Century and drink tea all day under my heated blanket. (To anyone working in Academic Affairs just accept that the add/drop period will never end. Ever, ever.)

Despite last week’s snowfall, I miraculously made it to Boston. I had every intention of writing my update last Tuesday after my appointment but in light of the MBTA basically imploding upon itself, my blog post would have been less about my health and more of a giant rant about public transit riddled with a generous amount of profanity and “f-bombs”. Seriously, anyone that tried to take a commuter rail, T, bus, or cab in the city of Boston last Tuesday must share my pain. How they managed to pull off a PARADE the next day when they couldn’t even get commuters to their jobs/lives the day before is beyond my comprehension. By the time I got to my appointments I’m almost certain my blood pressure was roughly one million over a thousand. (END MINI-RANT)

Per usual I was in Boston from morning until late afternoon playing the waiting game. In that time period I had two appointments: 1.) Ophthalmologist 2.) Medical Oncology. Stacey Applesauce Goldman was kind enough to join me in the waiting game and even sit in a dark exam room while I napped on the exam table.

Eye Doc: Good news! The last time I was there, three weeks ago, I was told that there was a trace amount of fluid starting to collect behind my retinas. This is of concern if ignored but can easily correct itself if one goes off drug. Apparently the three weeks spent on a chemocation did the trick and no fluid was detected. (I still want that seeing eye dog. Maybe I can make an argument for a therapy dog instead?)

Yes this one will do quite nicely, right Blythe family?

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  •  Oncology: This appointment was mostly just to get me back on chemo and to bring the doctors up to speed with the partial bowel obstruction experience.
    • Obstruction Recap– They determined that the bowel obstruction was unrelated to the study drug and left it at that. I tend to agree as I do have a history of sad guts prior to this trial. I mean, my intestines were cut in half and sewn back together only two years ago, that doesn’t just go back to normal overnight. My guts are cranky. So moving forward the plan for these cranky guts is to meet with the gastroenterologist again and plan for a full colonoscopy in a few weeks when she feels it is safe to push air through the intestines. We should have a little more information about what the thickening of the colon means after the colonoscopy.
    • Chemo- After much deliberation amongst the group, it was determined that I would be put back on the chemo regimen at a reduced dose of the SAR drug. I’m not sure how effective this will be in curbing my side effects as this drug could possibly be a placebo BUT it’s one less pill I need to take per day. Psychologically, it’s oddly helpful. So far this week I’ve experienced one day of visual blurring (common for first day back), fatigue (par for the course), nausea, leg swelling and stomach discomfort (details spared). So I suppose everything is back to normal then. It’s not great but it has been much worse.

I must be honest, I have thought a lot about quitting the trial over the last few months. It has been incredibly difficult and when my last CT scan came back at a plateau, it was tough to swallow. Through the last few weeks of being off of the drug I have had to physically, mentally, and emotionally rally. I think I am in a place now where I can at the very least commit to a few more months of this and see what comes of it.

As I have said before, part of the challenge is having no defined end date. It’s just this endless cyclical shitstorm. I’m going to try and reframe this in a more incremental way. My next CT scan should be in April. If I can just make it to April I’ll be okay. It doesn’t mean it’s over then, but it’s a small leg of the journey that I can compartmentalize.

So that’s all I have to say about the visit. A long day and not a lot of news.

Lastly, but most importantly I must express my gratitude…

Holy moly the response to my request for help has been unreal!!!! This past weekend alone, Cory insisted that I relax in the bathtub while he clean my apartment himself (boyfriend of the year, right?). From coast to coast and beyond the US people have been graciously helping in any way that they can. I have received delicious, healthy, home cooked meals made with love. I have received thoughtful gifts, offers to accompany me to the doctor, offers to help with laundry/cleaning/errands, generous monetary contributions to help with medical bills, and beautiful encouraging cards/texts/messages.

All of these acts of kindness add up and make my life a little bit easier, but more than anything they lift my spirits. It’s a major reminder that as fiercely independent as I would like to be, I cannot do it all myself. Your kindness is fuel to keep going and keep trying even in the midst of a difficult day.

THANK YOU for every little act of kindness!

loveislouder