Category Archives: Cancer Treatment

There’s no place like home (even if you’ve only seen it once before)

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We are approaching one week since I have been discharged from the hospital. This is (sadly) shattering my record from the past month of yo-yo hospitalizations.

Initially, I thought it would be uncomfortable leaving the hospital and moving into the new place. I didn’t even say goodbye to my old apartment. Like magic, with the help of a lot of friend/elves, I was just moved. Luckily the new house is a great place to recover and slowly but surely Cory and I are making it into a home.

What a stress-free environment. It is this little house with a perfect back yard and a garden. There are constant sightings of vibrant cardinals, bees, and hummingbirds. This morning I took my yoga mat into the grass and did some makeshift gentle yoga/stretching to get my body moving (after a month of being nearly sedentary). A bright red cardinal was perched on the tree above me the entire time. I couldn’t possibly be more “one with nature” in this moment unless I transformed into Bear Grylls and was dumped out of a plane into the Amazon.

Overall, my experience home has been the right prescription emotionally. I love our little town, the house we’re renting is comfortable and coming together, and my roommate is pretty easy on the eyes ;).

Since I didn’t actually write about getting discharged, I’ll keep it brief and stick to the important bits. They took incredibly good care of me there and kept the NG tube in up until about 30 mins before I left to be as precautionary as possible. But at some point your guts are going to do what they’re going to do and Dr. Robison felt it was best to get one more round of chemo in the hospital then go home and be normal*.

*”Normal”- not to be confused with ACTUAL normal living, but operating in a way that makes you feel somewhat free and human. Let’s call it normal light.

Going home was the best gift and the correct decision at that point. Dr. Robison also knows me all too well and probably anticipated that I would try to go back to work too soon. Just like a surgery, the body needs time to heal and repair itself especially after the added trauma of septic shock. That said, until I’m medically cleared I will be home for a little while and fondly thinking of my friends at Bryant from afar.

Unlike other discharges from bowel obstructions I’ve had, this time I was sent home having not even advanced to clear liquids. The only thing by mouth that I had in the hospital were Dum Dum lollipops (thanks to Sheila and Shakay for supplying). No, this time we were going to to sllllooooowwwwwwwwww as molasses to prevent ending right back up in the ER yet again. For now I’m still on Total Parenteral Nutrition (TPN) where I receive all of the calories and nutrients I need for the day over a 12 hour period right into the blood stream through my port. I’ve been supplementing this with tiny amounts (2-4 oz.) of watermelon Italian ice to reintroduce something into my system by mouth but that’s it.

Starting tomorrow, with the blessings of Sheila/my case manager/dietician, I am going to try small amounts of blended soups (like butternut squash) and pureed foods. Stocking up on baby food basically. I was advised to listen to my body and slowly reintroduce foods into my diet working up to solids (low in insoluble fiber). I miss real food but we are getting there slowly.

You can imagine how brutal it is when Cory (a very talented cook) is making dinner for himself. I awkwardly ask him to let me smell it and pretty regularly shove my nose in the direction of his food to at least pretend like I know what it tastes like.

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But Cory isn’t the only wizard in the kitchen. Watch the TPN master prep tonight’s dinner (with the help of some “muscle” to spike the bag). I made this video to take some of the mystery out of what is actually sustaining me and how I manage it (and cranked up the speed 15x as to not kill you with boredom).

What you’re watching:

  • Sterilizing pretty much everything with alcohol wipes
  • Injecting the TPN bag with additional vitamins and Zantac
  • Having Cory spike the bag because it’s not easy. You really need to jam it in there.
  • Hooking up the tubing to the bag and pump and priming the tubing to push out any air in the line.
  • Sterilizing the end of my already accessed port (the little tube hanging from my chest) and flushing it with saline.
  • Connecting the primed line to the port tubing and starting the pump. It’s all pre-programed so all I need to do is sit back and let dinner run through my bloodstream for the next 12 hours.

What you don’t see: 

  • The big white bag stays refrigerated but needs to be left out for about 2 hours prior to use.
  • I washed my hands thoroughly before starting the process, promise.

 

So what’s next?

Chemotherapy continues on Thursday bright and early in Providence. This is a Taxol only week so it shouldn’t be too bad. Oh by the way we are back on the weekly chemo regimen- every Thursday now. No breaks, no week off, no chemocation. We can’t afford to not be aggressive after all of this hospital business.

Put on your game faces folks.

As always I will keep you posted with a progress report. Thanks for continuing to send warm thoughts and wishes for improved health 🙂

I hope everyone is enjoying this gorgeous June weather and since I cannot- please eat double at barbecues and have some sort of boozy frozen drink on my behalf. (nom nom nom, in spirit).

❤

 

Go straight to ICU, do not collect $200

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The past few days have been nothing short of a frightening whirlwind for both myself and my loved ones. It isn’t until now that I even feel that I’m in a place to talk about it.

My last post was pretty positive. When I last left you I was discharged from the hospital, home, and looking forward to settling into normalcy outside the sterile white walls of the fourth floor at Women and Infants. I had taken the next day off from work purposely to give myself time to regroup before heading back to the office.

It’s a good thing I stayed home because everything took a serious left turn quickly.

I woke up Monday morning with pain in my abdomen, the kind of pain that I’ve felt time and time again with a bowel obstruction. As the pain increased to maximum intensity I ended up driving to the ER and checking into triage. From triage to where we are at present is where events are a little hazy for me but my family has been kind enough to fill me in. It’s not like I was totally knocked out or anything. I just remember in segments, like a scrapbook where the pages are out of chronological order.

It turns out the the bowel obstruction wasn’t totally resolved so we had that to deal with. WIH was kind enough to send me over the Rhode Island Hospital to have an NG tube placed. The purpose of the NG tube is to suction out any stomach contents/acid so that your intestines can actually rest. This time it inserted under fluoroscopy so they could see the hose being guided down into my stomach. This was to avoid last week’s debacle where the hose coiled over my hernia and didn’t make it into the stomach. I was technically awake for this but as I’ve written before, it’s a pretty traumatic and unpleasant procedure. They loaded me up with medication to make it more tolerable. That said, I just remember going there and then waking up back at Women and Infants.

I wish I could say that my situation improved from there but this is where it got scary. In the middle of the night I went pale, spiked a fever, my heart rate sped up, and blood pressure plummeted. I was given a blood transfusion because my hemoglobin was too low. I don’t remember much about this part but I do remember my room just flooded with nurses and doctors. Although I didn’t know it at the time, I was in septic shock.

My understanding of septic shock is that it is a bacterial infection in the bloodstream. The cause of why I ended up with it is still unknown. They scanned me a few times to see if I had a bowel perforation but they were not able to detect any holes of the intestine. The doctors told me that it’s possible with all of the bowel obstructions, the walls of the intestine experience pressure and bacteria can get in. .

There were a few things that became challenging in the ICU. First there were a lot of “cooks in the kitchen”. There was hardly a moment where someone wasn’t in the room with us, examining, asking questions, administering medication, taking vitals. I didn’t sleep more than a few minutes at a time for three days. I felt delirious. We also didn’t have a source of the sepsis so periodically there would be a different doctor from a different team making a different suggestion. Everything from colonoscopies to stints to surgery. It got to the point where my family was like “you need to talk to our oncologist, period.” We weren’t about to do anything, especially invasive procedures, without Dr. Robison.

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So in a small nutshell that was my time in the ICU. It was scary and stressful and high pressure. My poor family. I was lucky to have my parents and Cory there right away. My brother Adam even flew out to be with us and slept in the chair next to me all night that first night in the ICU (although I use the term sleep loosely).

As of yesterday I was well enough to return to Women and Infants.Thank god. It’s so much quieter and calmer here. I have a nice room with a pretty view. A small silver lining within this big shitty mess.

I’m a lot more liberated today as I am not tethered to so much “stuff”. They took the catheter out, I’m not on oxygen anymore, and I’m no longer hooked up to the vitals monitor and blood pressure cuff. I do still have the “nose hose” and a second central line in my neck but I can move around more freely than before. I took a walk for the first time today down the hallway and was able to move about to the bathroom on my own. It was nice to have the scrap of freedom.

I have some goals for the next week:

1.) Improve/restore my lung capacity

2.) Get the nose hose out and eventually eat real food.

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TPN: Current breakfast, lunch, & dinner

3.) Take no less than 3 walks a day around the unit

4.) Hope to God I get discharged by Friday so that I can attend Saturday’s 2016 commencement at Bryant.This is the first class that I’ve advised all four years and many of these kids mean the absolute world to me. It would break my heart if I missed this day.

I’ll keep everyone posted as we continue to make progress. Thanks for sticking with me everyone ❤

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“You’re up for parole!”

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“You’re up for parole!” my nurse exclaimed as she waived my discharge paperwork in the air. I was ready to twirl and prance out of that hospital room this afternoon when I found out that I could go home.

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Yesterday wasn’t too bad, just long and monotonous. I was thrilled when I got my first tray of clears after just being on an IV for a few days. The honeymoon period was quickly over after the 4th tray of the same chicken broth, juice, tea, and jello/”orange ice” arrived this morning.

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One of the doctors on rounds pointed to the tray of clears that had arrived for breakfast and said “you don’t want that, do you?” I gave an enthusiastic heck no and she gave me the green light for solid food. After a successful breakfast and lunch with no snags. I was able to go home.

As I’ve said before, bowel obstructions are not at all uncommon for people like myself that have had invasive abdominal surgeries, especially when the intestine has been resected. To date, I’ve had four obstructions since 2013 that have resulted in a hospitalization of no less than five days. It makes you wonder to what extent you can be preventative and how much you can really control.

So why is this continually happening? Well, we can’t be certain but we have some guesses. Two major reasons that bowel obstructions could occur (and no one reason is not that I’m just “full of shit” as my lovely nurse Sheila likes to say):

  • Tumor pressing on the intestine
  • Adhesions formed that cause the intestine to kink up

The most likely cause of obstruction for me is probably the adhesions because I have had two major, invasive, abdominal surgeries. Naturally there is going to be a ton of scarring. Unfortunately they cannot be seen on a CT scan so it’s hard to tell for sure. If we really got to a point where I was in the hospital every few weeks for obstructions, they could do surgery to remove the adhesions. That; however, would also lead to new adhesions that would form later on so it’s not the best solution unless totally necessary.

So that part is really out of my hands. What I do have control over is what I put in my body and the best course of action is a low residue diet. This means limiting the amount of insoluble fiber I’m eating and making food choices that will digest well and quickly.

Unfortunately this means no raw fruits or veggies, beans, seeds, nuts, hard cheeses, and whole grains. Even soft cooked cruciferous veggies like broccoli are really not good for my guts right now. In order to make sure that I am getting the nutrients I need to stay well and fight this disease it will be on me to find other ways to pack in those nutrients.

That means: Drinking my veggies through blended soups and green smoothies, packing in protein, and supplementing my diet with Ensure*.

*Sidenote- thanks to my loving parents that go above and beyond the call of duty always, I now have about a month’s supply of Ensure in every flavor.

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To all the employees that work for the company that makes Ensure, consider this job security.

Anyway, I really hope to stay out of the hospital. There are so many incredible things on the horizon in the next few months and I want to be out enjoying all of them fully.

I would be remiss if I didn’t speak to the high touch, loving, level of care that I received on 4 East at Women and Infants Hospital. With the exception of one nurse and one CNA, I had been taken care of at least once before by every other nurse and CNA assigned to me. They all remembered me and very specific details of my life. These people just have so much heart, I am lucky to be cared for by them. It matters so much when you are feeling pain/scared/frustrated/sick/vulnerable/all of the above.

Finally, I need to give a special thanks to Cory and my parents for making so many sacrifices this weekend to make sure I was not alone and in a good position to transition back to “normal life”. No mother should have to visit their daughter in the hospital on mother’s day. I love you guys more than I can even say.

Thank you to everyone else that called, texted, commented and left warm words of encouragement. I can imagine after over 3 years of this “I’m in the hospital again” bullcrap some would think “Ugh, again? Get it together Sultaire”. Every well wish and display of kindness means so much and has kept me going all these years. Thank you all ❤

 

 

 

 

Cautiously Optimistic

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Chemocation, oh sweet chemocation. You sure have been good to me.

Since holding the Taxol my hands have returned to their original size. My appetite is much improved and the consistent nausea is all but gone.

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I am grateful for this break to rebuild my body as it has been taken a slow beating over time.

Well folks, let the good times roll because we have decided to continue to hold Taxol and only pursue Avastin for the foreseeable future. I believe I touched on this a few weeks back when I mentioned that we would do a CT scan and “re-evaluate” come summertime.

Ultimately it seemed silly to go back on Taxol for one cycle knowing we may hold it again shortly after. So here is the new plan-

  • Avastin (the antibody) infusion once every three weeks
  • Check up with the oncologist every six weeks
  • CT Scan on May 13th

If the scan shows improvement or at least no new disease, we can stick with this plan. Otherwise, I have the option to go back on Taxol. In any case, there is really no harm in just seeing if Avastin could be enough to keep me well.

One might be asking, “if Taxol has been working, why would you voluntarily drop it?”

My answer lies in faith and trust. I have faith that Avastin (alongside nourishing food/exercise/holistic practices) could be enough to give me the quality of life we have been striving for and slowly achieving after all of this time. I have trust that should this plan reach a point where is must change, we have safety nets in place. As Mom so perfectly stated today, it is perfectly okay to be cautiously optimistic.

So with that, let’s get excited for what is to come. Hopefully improved health, a new home, and a fresh chapter.

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Chemocationing & Making MOVES

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There are three major things that I want to talk about: one piece of news is “eh”, the other is good, and the last is fantastical. Let’s dive in in that order and get pumped up.

 

1.) CA-125

My CA-125 was tested this week and made about a 300 unit jump to the mid 700’s. Not surprising considering the inflammation that likely exists in my body post bowel obstruction. Also my hands have been pretty swollen recently so that never helps the numbers either.

 

Overall I’m not concerned right now. I’m going to start taking the steroid Decadron regularly and see if that helps.

 

2.) Chemocation!

Since I have become “Mr. Balloon hands” we decided that a little break from chemo could be beneficial. I did receive Avastin as scheduled today but I didn’t have to get Taxol. I’ll also have the next two weeks off from it as well. Woo hoo!!!

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and the best for last…

3.) Roommate

I am the most thrilled to share that as of June 1st Cory and I are going to be roommates! (He hates it when I call him that)

Let me rephrase- we are going to be venturing into a new and exciting chapter of our relationship as we just deposited on a house for rent in Pawcatuck, CT. I couldn’t be happier. The house is everything we wanted and more, it’s just 2 minutes down the road from downtown Westerly, 15 minutes from Misquamicut beach, and our landlord is incredibly kind and down to earth. The house is also a commutable distance to both of our jobs so aside from a longer drive, no job sacrifices had to be made.

Finding this house this week was especially timely because it is also our two year anniversary. I am grateful every single day for Sam Favata introducing us at that beer fest. I had no idea on that day I would find one of the greatest support systems on the planet. Remember- I was already very much cancer-fied when Cory met me and he still signed up for this wild journey in spite of it. We have faced a lot as a couple in dealing with this illness and the relationship hasn’t wavered.

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I look forward to building a home life together which includes but is not limited to: Back yard BBQ’s, Cory cooking amazing food, eating said amazing food,  aggressively competitive board game nights and a lot more Nerf wars (I think we’re actually children).

 

That’s all for now! I’m always happy when I can share some positive updates. I hope everyone has a delightful weekend 🙂

 

 

Top 5 Tuesday: What’s in your bag?

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For anyone that has seen and come to love the movie High Fidelity with John Cusack you would know that he would be proud of this addition to the blog since his character makes Top 5 lists throughout the film. Luckily I won’t be listing top 5 saddest break up songs or anything like that. This is a little more practical and cancer-esque.

Now I tend to shy away from dishing out “how to’s” because there is no instruction manual for cancer and everyone’s experience is uniquely theirs. But I can offer some nuggets that have come to help me personally over the years. If you find any of it useful, perfect! If not, find comfort that I still have a day job.

When you’re in chemo you have a lot of time on your hands and comfort isn’t always optimal. Here are my Top 5 must-haves packed for a chemo infusion.

1.) A designated chemo bag

This seems like a silly one but let’s face it, chemo brain is very real and without some level of consistency I will likely forget to bring something to treatment. I generally use one of those reusable cloth grocery bags. I’m glad they’re getting used somehow because I am the worst offender of owning them and forgetting to bring them with me to the grocery store. Sorry environment. I’m trying, really.

A reusable grocery bag or tote will be enough to fit a few necessities. Keep it in your car if you drive yourself to treatment or pre-packed in the same spot in your home.

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I think we can agree that I should upgrade from stop and shop bag to this gem. GASP. NEED.

2.) A soft/fuzzy blanket

As a blanket enthusiast I have many throws around my apartment but I have one specifically that I keep in my car so that I never forget to bring it with me to chemo. Why BYOB (Bring Your Own Blanket)?

  • Hospital blankets are generally glorified burlap tarps. They don’t provide much warmth beyond the first few minutes out of the blanket warmer and the material doesn’t make for a cozy experience.
  • Emotionally it’s nice to have one blanket specifically for chemo so I am not making that association when I am trying to relax at home. That blanket serves one purpose, my other blankets are my home blankets.
  • Sometimes one of the pre-drugs for chemo (depending on your treatment) is Benadryl. If you are anything like me you’re cross eyed within a few minutes and ready for a solid chemo nap. When I’m napping I am seeking optimal comfort, especially if I’m being infused for a few hours at a stretch.
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This is what I’m 99% sure I look like post-Benadryl

3.) Entertainment

Boy is this necessary. My first stab at chemo had me there for 8-9 hour infusions. Now it’s more like 2-4 hours. You have a lot of time on your hands here. In the chemo units I have experienced there are usually televisions and maybe a few magazines hanging around. I would suggest packing one or more of these items for variety.

  • A good book. I prefer something that is going to make me chuckle. If you haven’t read anything by fellow blogger Jenny Lawson do it. You will undoubtedly be THAT person belly laughing in the chemo unit.
  • Cell phone with good battery life
  • Tablet or iPad if you have one. Good for movie watching/Netflix binging if the cable options aren’t great or answering work email if you’re still working and a true overachiever (just don’t answer email post-Benadryl…trust me. It makes for some weird outcomes)
  • Favorite magazines or crossword puzzles. Nice touch for your chemo bag for the sake of anyone volunteering to come with you for support. If you’re a chemo napper like me, your friend/loved one is going to need entertainment as much as you.

*Ok, ok so I know I cheated with #3 and listed 4 different things in a Top 5 list. You can write angry letters to the editor if need be. Spoiler Alert: I am also the editor.*

4.) Phone charger/Ipad or tablet Charger

I mean, if you’re there for a few hours killing time with non-stop Facebook and Insta-creeping you’re going to need to charge up.

5.) Sweater/Sweatshirt

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Maybe have a little bit of chill and don’t pack this one…

I’ve found that comfort and layers are key. The particular chemo drugs that I get make me immediately freezing then I wake up sweating bullets shortly after. Having an extra sweater to keep in your bag can help to manage that. Also if you’re low on magnesium and they add that to your IV, it tends to make people run a little warm

 

So there you have it, my top chemo staples for maximum enjoyment  okay-ness?

I purposely did not include water/snacks/meals because in my experience the infusion center has graciously provided that in all three hospitals that I have been in. If yours does not it never hurts to have a bottle of water to stay hydrated and a granola bar or fruit to keep your tum tum happy.

 

Cancer friends- what are your top chemo necessities? I’d love to hear from you! Feel free to leave your favorites in the comments.

 

 

 

Recovering as George

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First, I must thank you for the outpouring of support over the past week while I spent four nights in the hospital resolving the obstruction in my small intestine. The words of encouragement mean more than you know especially when you feel like much is out of your realm of control.

I was discharged on Wednesday and have been trying, successfully I might add, to proceed with a high level of self-care. I pretty much needed to fight all of my natural instincts. So basically I’m operating on the “Constanza Principle”…

 

  • Instinct #1: I haven’t been at work in many days and I have to go back on Thursday or the world will explode
    • Opposite action: I was strongly encouraged and well supported by my supervisors and colleagues to return on Monday when I was feeling better. I was admittedly starting to feel anxious as my inbox piled up with questions that I couldn’t necessarily answer from home so I made a compromise with myself. I slept in on Thursday and at my leisure went to my office for an hour MAX, closed my office door, knocked out enough to feel less anxious, and went home.
  • Instinct #2: I am discharged which should mean that things are improving. There is nothing to talk about.
    • Opposite action: The night I was discharged one of the first things I did was email Dana, my social worker, at the hospital and ask for an appointment this week to “debrief”.
      • I will write more about this next week but one thing I have learned time and time again and not properly addressed is that when you are hospitalized you have experienced a trauma (anyone who truly understands what it’s like to have an NG tube placed while you’re awake can give me a chorus of “amen sister!”). Trauma’s are not all blood and gore- you are in a vulnerable position, you are not in control of what is happening to you, it is a trauma, period.
      • I went into my appointment not fully knowing what I wanted to talk about. Truly, I walked in there feeling pretty stable. As I anticipated there are issues that bubbled up that started with the hospitalization and weaved into other concerns both medical and non-medical. This appointment was the best gift that I gave myself this week. To express certain concerns out loud, to validate feelings, to have a good cry in a safe space where I don’t feel inclined to edit my thoughts- it was truly healing. I’m glad I nipped this in the bud.
  • Instict #3: Resting = Sitting in pajamas and binge watching TV
    • Opposite action: 
      • Ok fine I totally binge watched The Wire and old episodes of Veep on HBO. BUT I honored myself in other ways too!
      • I invested in my body by booking a massage at the Alayne White Spa. I didn’t truly know how many knots existed in my back until I got on that table. At one point I was face down and was so relaxed that I dosed off. I woke up to my mouth gaped open like an idiot and I was totally drooling on the floor through that little face hole. I’m 99.9% sure I didn’t drool on the massage therapist’s sneakers. Fingers crossed.
        • Funny aside: As I was on my way out post-massage I ran into Heather (infusion center nurse manager) and Nancy (4th floor oncology nurse). They were there for facials that they won at a silent auction. One would think that any reminder of the hospital the day after a hospitalization would conjure up negative feelings. I was just so happy to see these lovely faces outside of a medical setting I had to fight back happy-tears.
      • In addition to the massage I also treated myself to some time in one of the more peaceful venues in Providence, The Duck and Bunny. I enjoyed a quiet snack of crusty break drizzled with olive oil with Narragansett  Creamery ricotta and a pot of chamomile tea. It was calming and so good for the soul.
  • Instinct #4: I’m out of the hospital which means I’m capable of doing things for myself
    • Opposite action: Sucking it up and letting people offer their help because it just makes life easier
      • Mom and Dad cleaned up and did my laundry so I could come home to minimal work (seriously, gems). Also after arriving home after 15 minutes of me trying to convince them that I’d “figure out” something for lunch, I gave in and let them indulge me in a sandwich from Olga’s. I would have probably made a PBJ so they called my bluff.
      • Katie “Mamamamamabear” Carlson gave me a ride to Beth and Brendan’s house to dye easter eggs with her family. Sure, I could drive myself but it was very nice to have a ride. (p.s. I’m not very good at dying easter eggs #jewishkidproblems)

 

So there we go, trying desperately to practice self-care that I speak so highly of but don’t often practice.

Off to spend the weekend with my parents and back to work on Monday, hello sh-normalcy!

 

 

 

Maximizing Chemocation

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As I sip on a delicious Rhody from Vanuatu Coffee Roasters I soak in the last 40 minutes of normalcy before heading into a new chemo cycle. Today is the big one- Taxol and Avastin. I expect to be pretty beat this weekend but as always I am hoping for the best.

To quickly recap last week’s chemocation I REALLY packed it in. I joined Aaron, the Director of Advising, for the 2016 NACADA Region 1 Conference in Portland, Maine. It is always refreshing to see what other schools are up to, absorb new best practices, discuss issues in higher education, and to also see what we’re doing well. As my Instagram account reflected, Aaron and I were pretty damn gluttonous in Portland. You just can’t not be. Our highlight was certainly tasting the tomato fennel soup, poutine, and salted caramel milkshake from Duck Fat.

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Needless to say, my return home has resulted in compensating with a lot  of fruits and vegetables.

Just when I returned home I pretty much unpacked just to pack again. My handsome, intelligent, mancrush everyday- Cory Tysoe had a birthday! He has now reached the ripe age of 28 which means that I am officially no longer a cougar (until January when I turn 29). To celebrate we utilized a holiday present from my parents and headed to Vermont to Mt. Snow. Unfortunately the weather wasn’t totally cooperative so Cory didn’t get much time on the mountain before getting pelted by hail.

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We spent a good majority of our time testing our relationship through Farkle and Risk. Anyone who knows me knows that I am generally not at all competitive. Like for real I bowled a forty the other day. FORTY. And that was better than expected. That said, there are a few things for which I am fiercely competitive- Scrabble, Risk, and Farkle.

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I was happy to cozy up by the fireplace and toss some dice around while ruthlessly talking shit to each other although next year I may join the toddlers on the bunny hill and give skiing a shot. We’ll see…

So that brings us to St. Patrick’s day, yesterday. Sarah, my former coworker Krystal, and I threw a St. Patty’s party in the Izzy Room at Hasbro Children’s Hospital. We decked out the room in festive green, Bob and Timmy’s donated SIX pizzas, and we offered crafts and cookie decorating. Although the party only yielded three physical attendees I would still call it a success. There were several children that were too sick or not allowed to leave their rooms. What we ended up doing was essentially creating a “party on the go”. We delivered pizza and some craft supplies to a mother of an 11 month old in the PIC unit. We also packed up pizza, cookies, st. patty’s swag, and crafts for parents and nurses to bring back to the rooms of families that wanted to be at the party but couldn’t. In any case the Izzy Foundation was able to bring a little cheer to people going through tough time.

The three of us had a blast 🙂

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^ Mine is the one with the fuzzy eyebrows 

Last but not least, I met with Dr. Robison yesterday for the usual chemo exam. She was pleased with the outcome of using the steroid and gave me the green light to keep taking it in line with the chemo cycles if it is helping.

We won’t have an updated CA125 until later today or Monday so I’m not sure where that stands right now but she said that if it made a significant jump upward she would be inclined to scan me. If it is a small increase or lower/unchanged the plan is to scan this summer as we previously discussed.

Soooooo that’s all folks.

I hope everyone has a safe and happy weekend!

 

 

 

ROID RAGE! (or responsible use…either one)

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Holy 180! Since I last wrote I feel like a totally different person. Mainly because I’m ‘roiding out right now.

Let’s be perfectly clear-

Not this kind of ‘roiding:

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More like starting a low-dose, short-term steroid treatment to curb concerns regarding fatigue/poor appetite/nausea/vomiting. Thanks to the brilliant Donna MacDonald, a case manager at WIH, we put into action a 10 day dose of Decadron (Dexamethasone). Decadron also helps to treat inflammation in the body which, if the CA-125 is any indication, I have a boat load of.

Sidenote: Doesn’t Decadron sound like the name of a fictional planet from some sort of Sci-Fi novel? It does to me. Oh well, I digress…

I am to take two pills in the morning for the first five days then will taper back to one pill in the morning for the remaining five days. So far the magic is working!

  • I haven’t thrown up once this weekend
  • My energy levels are unparalleled. I am usually clinging to life on Mondays, today I feel as if I slept 10 hours and drank a cup of coffee in comparison to the norm.
  • I’m hungry! The thought of food is enticing instead of stressful/nauseating. For lunch today I craved a balsamic-pesto-grilled chicken wrap and housed over half of it (which is substantial for my eating patterns of late).

It’s amazing what one simple change can make. It is really just a testament to the support at Women and Infant’s Hospital. Between Sheila (nurse navigator), Rosa (chemo infusion nurse), and Donna (case manager) they had three different reasonable recommendations to assist me in the nausea/vomiting/appetite issue. All three contacted my oncologist right away and have put plans into action. They’re the best. Seriously, people who are genuinely concerned and get shit done. Period.

I’m especially grateful for this help because yesterday was one of my best friend’s. Katie Carlson’s, baby shower. It meant the world to me to feel well enough to enjoy her special day. As you can imagine, it’s hard to stay present and soak in the special moments when you’re nauseated/throwing up/exhausted. I felt pretty optimal for most of yesterday and seeing this face (and belly) was perfect.

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Go team!

Make Plans and Cancel Them (Maybe)

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We measure wellness constantly. In my world this is mainly accomplished by making me hold my breath while being shoved through an oversized donut (CT scan) or sucking blood out of my veins by a professional vampire (phlebotomist). Just last week my primary care measured wellness using a battery of blood tests that lead me to believe that she thinks I’m malnourished. BUT in the encouraging words of my PCP: (*clears throat for best thick Russian accent) “Just LEEETLE beeet more protein. You be okay.”

Not a week has gone by in recent years where I didn’t have some kind of medical test keeping tabs on me. Are my CA-125 levels up? How are my blood counts? How big are those tumors?

It wasn’t until just today that I realized there is another test of wellness, albeit a very simple and unscientific test…

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My willingness and ability to make BIG plans and keep them.

Now I don’t mean dinner and drinks on a Tuesday night after work (although keeping real pants on after 5pm is a drag). I mean looking six months down the road and saying, “Well, heck yeah! I’m absolutely down to fly to Iceland and explore aimlessly.”

Not that Iceland is set in stone but I use it as an example, a benchmark really, for my confidence in my body’s ability to behave for more than 10 goddamn seconds at a time. There was a time, not long ago, that the thought of leaving the country with this illness terrified me. What if I have an intestinal obstruction? What if I’m too sick to stick to our plans? Straying far from Women and Infants, my medical security blanket, seemed impossible.

Just a year ago there were days where I wouldn’t even commit to going to a restaurant in anticipation of throwing up endlessly and/or having my stomach explode.

Now, I’m in a place where I feel well-enough, more often. Not great all the time, far from it. But well-enough to take greater control of my desires in life and the confidence to carry out those plans. So when Cory pitched the idea of researching Iceland, my first thought wasn’t “holy crap what will I do if I’m too sick?”, it was “holy crap I totally need to save every spare penny to make this happen.”

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One of the best pieces of advice that I have continually soaked in from other cancer crushers is “make plans and cancel them”. Look to the future, always, but give yourself permission to back-out without guilt if you get there and your body isn’t cooperating.

So aside from the tumor markers and scans, my newest (and possibly most important) measurement of wellness is the frequency and manner in which I look to the future and make big plans. To plan beyond the everyday is certainly indicative of a slow and steady increase in wellness, quality of life, and most of all- PROGRESS.

See you under the northern lights.