Ask and you shall receive

Hi Friends! I hope all of my New Englanders didn’t get too buried in the snow. I was fortunate to have both yesterday and today off due to the Blizzard. Thanks Juno! The blizzard also brought about a couple acts of kindness:

1.) Sheila and Andy live down the street from me and knew digging out my car would be a hardship so they just came over and dug it out/cleaned it off, no questions asked. THANK-YOUUUUU!

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2.) When my neighbors got locked out because our front door froze shut everyone came together to “rescue” them. Luckily another neighbor with much more size and weight than my frail self came and body checked the door. That prompted us to all talk more than just a “hi” in passing. My downstairs neighbors later invited me over for dinner ūüôā

So that is Juno in a nutshell. I really hope everyone stayed safe.

I want to follow up on a piece I wrote recently¬†(https://boldbaldbattle.com/2015/01/15/swimming/). It was super difficult to write because asking for help when you’re trying your best to be normal is incredibly hard. The response to that entry was unreal. I had numerous offers for people to hire housekeepers, send me food, sign me up for food services, take me out to dinner, etc. It is so heartwarming and I am grateful for all of these offers. Here is an update on what I need and what has been decided:

1.) Cleaning: I looked into a service for cancer patients but unfortunately they are not taking any more patients in my area. My parents have graciously stepped up (as they always do) as my resident housekeepers. Every now and again if they are in the area or traveling to the Cape that have made themselves available to help me with some household tasks. Thanks Mama and Dad! This also cuts down my anxiety of having a stranger in my apartment when I’m not home.

2.) Healthy Meals/Groceries: So many awesome offers! A lot of them came in the first week of posting. To keep everything organized and ensure that I have some consistent help I set up a CaringBridge page. This has a planner where I can post what I need and when, then you can log on, accept the task and we can make arrangements from here. I asked for one meal donation per week (just a dinner for one or something I can take to work for lunch). I have also included all of my crazy, stupid, dietary restrictions.

In addition to this I have my amazing cousin, Sara Kaplan, on the case. She has done a lot of research on my dietary needs (going as far as making a pinterest board just for recipes for me haha) and will be sending some individually portioned meals that I can just thaw and throw in the microwave or oven. Knowing Sara, this will go a long way! (I see a future business blooming Sara, just sayin’). I also have a lot of soup. Stack Bundlezzz Goldman made me some incredible veggie soup before I went into the hospital and her “twinnie” Alita Perez Garvey (all the way from Thailand) has arranged for a local Whole Foods Soup delivery.

Finally, my downstairs neighbor is a Johnson and Wales culinary student and I have hired her to prepare one healthy meal per week as well. So between that, everything listed above, ¬†the CaringBridge meal donations, and weekends with the ever dapper Cory Tysoe, I’ll be all set.

So from my family, to my boyfriend, to my friends, to my entire bear family, to my personal trainer to EVERYONE else in between that is making an effort to help me be well, THANK YOU! If you were not mentioned by name, you are certainly not forgotten.

If you are interested in helping please go to: http://www.caringbridge.org/visit/jess.sultaire/planner

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Here is a screen shot for an example. If you would like to bring me a meal on one of the days that I have designated, or travel with me to MGH, etc. simply hover your mouse over the task then click “accept task” and you can type in your information. Now I know who is doing what, when, and it leaves out the guess work for everyone ūüôā

There is a donation thing on there called tributes but honestly I don’t know if it just goes to the website or me so to err on the side of caution I would just avoid it because I don’t know where that money is going. Honestly, I think it just goes to the website as a whole.

Thank you again for all of you love and support through these challenging times. I wish you all happiness and good health!

Moonwalking

Since getting released from the hospital I am certainly happy and more comfortable at home. Unfortunately I’m not totally out of the woods with this bowel obstruction. I had an appointment with a¬†GI immediately after I was discharged and when she felt my abdomen she said I was still blocked and distended. She seemed a little surprised that I was discharged. She told me if I run a fever, have extreme pain, or throw up even once to take a U-turn back to the hospital. She also recommended I go back on a mostly liquid diet for a few day. So I’ve been pushing water, juice, ensure, broth, etc. Today I may try to eat some soft peaches, without the skin of course.

I still have some discomfort in the abdomen but it is certainly not as extreme as when I was admitted. As long as I am careful about what I am putting into my body, little by little, this little bugger should resolve itself slowly. I have been doing a great job of wrapping myself into a heated blanket burrito, resting, and watching an excessive amount of bar rescue.

The other concern that the GI and I discussed was the thickening of the colon seen on my CT scan. Unfortunately she will have to do a full colonoscopy because the thickening can be seen on both the right and left side of the large intestine. It is not safe to have this procedure done so close to a bowel obstruction as pumping air into the colon could cause a worse obstruction or perforate the colon. She will be waiting 5-6 weeks for this.

If she finds something inside of my colon, like a polyp, she could remove it then. If she does not see anything during the colonoscopy that means the thickening is external and could point to teeny, tiny, tumors studding the outside of the colon. Cancer can also sometimes cause a film (apparently?) so she said that may also be a reason but we will not be jumping to any conclusions until the colonoscopy is done. So for now, I’m taking everything as status quo.

As of right now I still have an appointment to see the oncologists in Boston for Tuesday but I really don’t feel good about going back on drug with a lingering bowel obstruction. I wrote to them yesterday to see if I could reschedule…the jury is out until Monday. Fingers crossed.

So although I’m not pleased to be taking a step backward, I am happy to have sound medical advise that won’t land me back in the hospital. I knew it was way too soon for solid food. So instead of backpedaling let’s just keep it festive and call it moonwalking.

Love & gratitude my friends ūüôā

Discharged

This will be short and sweet. After 5 days at Women and Infants Hospital I am finally feeling well enough to go home.

I plan to go back to work on Monday but I have another appointment on Tuesday at MGH to restart chemo. So much for my chemocation.

I am looking forward to getting cozy in my bed and falling asleep to the gentle sounds of police sirens and pedestrians yelling. It will be a welcome change from getting woken up from beeping IV’s, 1am vitals, and 5am blood work.

Sick right?

My abdomen is still tight and sore but I am no longer in pain to the extent that I was on sunday. I plan to keep my diet light, bland, and mostly liquid for the time being.

Thanks again for the support through yet another hospitalization.

Love & gratitude

Now we’re cookin’ with gas

Another semi-brief update as I do not trust what I type under the influence of Dilaudid. Seriously I actually sent this cryptic text last night with no idea what I was trying to say:

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After 9pm I should be put on digital lock down. When I was talking to Cory I would have mini-moments of altered reality and start talking about absolute nonsense . EX: “and I JUST bought new silverware!” …um okay.

So I’m time limited for all of our benefit. Today improved! I am stretching out pain meds to every 6ish hours instead of every 2. The docs put a stethoscope to my belly and heard good bowel sounds in each quadrant.

I felt well enough to shower and walked up and down the halls of the 4th floor to keep my guts moving. I even popped into the social work office and caught up with my favorites. Showing up in a pink floral johnny, hospital socks, and an IV pole unannounced was a bit comical but they didn’t seem to mind.

I’ll be meeting with one of the SW’s tomorrow with the dietician to strategize for meal prep and services.

So the main event today was the coveted “toot”. One toot to rule them all. If you’ve ever had abdominal surgery or cancer you know what a major deal this. When your guts aren’t working, and you toot for the first time in the hospital, they treat you like you scored the game winning touch down in the Super Bowl.¬† Out of respect for my readers I try to refrain from talking about bowel habits but I cannot stress to you how important it is.

After my stroll around the 4th floor I heard my little stubborn guts gurgle and shortly thereafter, a tiny toot followed. I rang the nurse station with pride as I delivered the news of my great accomplishment.

This earned me a prize! I can now have small sips of clear liquids. I chose hot tea and it made my tummy flutter with joy. Let us not forget that I have not been allowed to eat or drink ANYTHING since I got here. My last meal and sip of water was on Saturday night. This was a welcome treat.

So tomorrow my fingers are crossed for some solid food. Depending on how the docs feel about my progress I could potentially be discharged late tomorrow or Thursday.

I want to take this opportunity to thank a lot of people. My parents first for always having my back and making my life easier by going to my apartment, cleaning, and doing laundry so I can come home to a nice space. Not to mention all the hours of driving and sitting by my side in a super cramped hospital room (even when I’m cranky). I also want to thank Cory for traveling 3 hours round trip each day to be by my side and putting up with my incoherent Dilaudid rambling.

Thanks to everyone else that has visited, brought thoughtful/hilarious gifts (sheila!), sent uplifting texts/ comments, and kept me in your positive thoughts. I am truly blessed to be a part of such a kind network and community of people. I leave you with love and gratitude.

Updates to come!

Another semi-brief update as I do not trust what I type under the influence of Dilaudid. Seriously I actually sent this cryptic text last night with no idea what I was trying to say:

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After 9pm I should be put on digital lock down. When I was talking to Cory I would have mini-moments of altered reality and start talking about absolute nonsense . EX: “and I JUST bought new silverware!” …um okay.

So I’m time limited for all of our benefit. Today improved! I am stretching out pain meds to every 6ish hours instead of every 2. The docs put a stethoscope to my belly and heard good bowel sounds in each quadrant.

I felt well enough to shower and walked up and down the halls of the 4th floor to keep my guts moving. I even popped into the social work office and caught up with my favorites. Showing up in a pink floral johnny, hospital socks, and an IV pole unannounced was a bit comical but they didn’t seem to mind.

I’ll be meeting with one of the SW’s tomorrow with the dietician to strategize for meal prep and services.

So the main event today was the coveted “toot”. One toot to rule them all. If you’ve ever had abdominal surgery or cancer you know what a major deal this. When your guts aren’t working, and you toot for the first time in the hospital, they treat you like you scored the game winning touch down in the Super Bowl.  Out of respect for my readers I try to refrain from talking about bowel habits but I cannot stress to you how important it is.

After my stroll around the 4th floor I heard my little stubborn guts gurgle and shortly thereafter, a tiny toot followed. I rang the nurse station with pride as I delivered the news of my great accomplishment.

This earned me a prize! I can now have small sips of clear liquids. I chose hot tea and it made my tummy flutter with joy. Let us not forget that I have not been allowed to eat or drink ANYTHING since I got here. My last meal and sip of water was on Saturday night. This was a welcome treat.

So tomorrow my fingers are crossed for some solid food. Depending on how the docs feel about my progress I could potentially be discharged late tomorrow or Thursday.

I want to take this opportunity to thank a lot of people. My parents first for always having my back and making my life easier by going to my apartment, cleaning, and doing laundry so I can come home to a nice space. Not to mention all the hours of driving and sitting by my side in a super cramped hospital room (even when I’m cranky). I also want to thank Cory for traveling 3 hours round trip each day to be by my side and putting up with my incoherent Dilaudid rambling.

Thanks to everyone else that has visited, brought thoughtful/hilarious gifts (sheila!), sent uplifting texts/ comments, and kept me in your positive thoughts. I am truly blessed to be a part of such a kind network and community of people. I leave you with love and gratitude.

Updates to come!

Back in the Hospital

I’ll keep this update brief (mainly because my pain meds cause me to doze off mid sentence).

I have been admitted to Women and Infants Hospital after being diagnosed with a bowel obstruction. In short this means that my intestines are not passing its contents. In some cases there is a physical blockage and in other cases its just the intestines not doing their job right. This is not uncommon for someone that has had abdominal surgery (like me).

The game plan for now:
-Watch and wait. The problem generally just needs time to resolve itself.
-NPO- no food or drink. I’m hooked up to an IV to keep me hydrated
-Pain Management- they have been dosing me every 2-3 hours with Dilaudid (think morphine +)

So that’s it. I’m here at least another night and we will see how it all plays out.

Special thanks to Sarah for dropping everything to bring me to the ER and staying with me for roughly 10-11 hours. Thanks to my parents and my handsome boyfriend for making the trek from CT to be with me last night. Lastly, thanks for the kind texts, calls and fb comments! I truly have the best support system.

.. OK good I only managed to fall asleep while typing 4 times. It’s a record.

I’ll be updating as info unfolds.

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Swimming

I’ve been listening to an awful lot of Jack’s Mannequin lately. Singer, Andrew McMahon, was a teenhood idol of mine (Something Corporate anyone?). I was fortunate to see him honored at the 2014 Stupid Cancer conference in Las Vegas this past April. Andrew is not only a soulful artist but has thrived through a cancer battle of his own. It is no surprise that his music resonates even more with me now.

It is likely that I have listened to (and cried to) this song at least 100 times in the last week. It serves as a reminder to keep going despite the obstacles working against you.

Go ahead, take a listen, I’ll wait…

Here is where I get real with y’all. I’m swimming and swimming and goddamn the current is fierce.

I generally look normal, I’m working full time, and I’m social, right? Though I do not feel defeated, beneath the surface I am worn down to my core. The trial is physically so taxing and isolating. What’s worse is that there is no defined ending to keep my spirit afloat. Thank goodness I made an internet friend from Belgium on the same trial because there is literally only ONE person on the earth that can resonate exactly with what this is like (whattup again Trudie!).

On Tuesday I had my check up in Boston. I’ve been putting off writing about it until today because I am still processing. It wasn’t the worst news but it wasn’t the best either. My CT scan showed zero progress. It is¬†exactly the same as it was in November. The exceptions are that the fluid-filled cysts(?) in my abdomen are slightly bigger (my doctors have no idea what they are or why they’re there). Additionally, the radiologists noted a thickening on parts of my colon and the eye doctor found trace amounts of fluid behind my retinas.

All in all this isn’t the worst news because the tumors aren’t growing so that means the drug is still kind of doing its job.

The disappointment comes from seeing no forward progress in light of all of the physical side effects that have been dragging me down. I could more easily push through the fatigue and vomitting and stomach aches and other bullshit if I was still crushing these tumors. But this time I didn’t and it was disappointing. For the umpteenth time, my medical group consoled me as I cried in the exam room (there has GOT to be a market for human tears. Please for the love of God, someone pay me for a tear donation! I’m a cash cow!).

So anyway, the doctors let me take a two week chemocation and plan to dose-reduce me when I am back on drug. I am also scheduled to¬†have a consult with a GI in Providence as a precaution for my colon. So that’s that for now.

Generally speaking,¬†I’m pleased that there has been no growth but the other part of me is like what the eff¬†universe?! Cue Hulk Smash…

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After the visit, I did some soul searching. My quality of living has been disturbed and I know that I have the ability to return to a better physical and emotional space.

Work has generally been fine because the people I work with are incredibly remarkable human beings and they support me every damn day. That being said I have felt so sick and fatigued that I have let some other key areas of my life suffer:

1.) I am not eating well. By the time I get home from work all of the energy I mustered up is spent. I’ve reached my limit and I don’t eat in a way that nurtures my vessel.¬†Paired with a poor appetite, it has not made for¬†a situation where I am using food as medicine. A bowl of rice crispies sure as hell isn’t going to reduce the inflammation in my body or give me¬†energy.

(***SIDENOTE: Thank you to my cousin Cris for juicing for me all weekend when we were in Florida! My body thanks you!!!)

I need nutritious food that will not be rejected by my sad chemo tummy. 

2.) I’m not¬†maintaining my beautiful apartment as I would like to. Dishes will sit in the sink, floors will go unswept, clothes will sit in my hamper for days on end. I’ve never claimed to be a neat freak, I’m far from it. A small mess doesn’t bother me but when it accumulates it does. I’m again so exhausted physically AND emotionally that I can’t get myself to do simple tasks like this.

This is the negative self-talk that goes through my head: “There is only one of me for goodness sakes! How effing hard is it to wash a pan??? Whatever I don’t have it in me, I’ll do it tomorrow” Then I stick my head in the sand, pretend not to feel bad about my negligence, wrap myself up in a blanket and¬†call it a day.

I need to maintain the harmonious environment that I have created by keeping my space clean and uncluttered.

3.) My emotional health has been fragile. I’m too hard on myself often. I compare my abilities¬†to others that are not facing the same types of obstacles and expect too much of myself. I put on a facade that everything is just fine when deep down it’s really, really, hard. Aside from doing more yoga, exploring creative outlets, and talking to my social worker there is something else that will aid my emotional health and because I am stubborn, I rarely do it. I don’t ask for help enough.

I need to ask for help. 

If you are my friend, you may be¬†thinking to yourself “well if she just asked I would totally help her!”

This is what I need you to know: 

1.) Sometimes I don’t know what I need. I have made it a point to prioritize and¬†clarify some of my needs above for this reason.

2.) Asking for help makes me sometimes feel exposed and vulnerable.

3.) Asking for help with things like meals and cleaning makes me feel guilty that I am monopolizing time that you could be using for your own life. I cannot think of a single friend that would make me feel like a burden, but again, negative self-talk is a nasty bugger.

4.) Because I work full time and maintain a social life (not out clubbing but still out and about)¬†I am afraid that I will be perceived as a fraud if I ask for help. It’s not obvious to others that my energy is depleted at the end of the day because I put on too good of a front sometimes. I would never want anyone¬†mistake me for¬†abusing their kindness.

5.) I love you, care for you, and¬†don’t want to¬†bring you down or make you worry.

Asking for the help of people that you love and care about is one¬†of the hardest life lessons I’ve encountered. Giving up control and opening up my world¬†in this way is hard. You may think nothing of picking up some groceries for me but I OVERTHINK it.

I have had many wonderful talks with my momma and¬†boyfriend about accepting help. They have done a great job of helping me see from their lens that this disease makes them feel helpless too. What is in their realm of control is¬†being able¬†to assist with some of the things that I’m too worn out to do all the time. In a situation where all they can do is watch from the sidelines, it is important that I allow them to be active in this process in the ways that they do have control.

Please know that this is really hard for me but I am going to make an honest effort to be more transparent and do more asking (within reason, obviously).

My last note is a giant, enormous, thank-you to my cousins: Dave, Cris, Mason & Alex. They graciously shared their beautiful home with Cory and I in Florida last week. The trip was therapeutic and full of relaxation, laughter, and love. I have but a wee little family but boy are they amazing.

Now to come full circle, back to Jack:

“You’ve got to swim and swim when it hurts. The whole world is watching, you haven’t come this far to fall off the earth”-Jack’s Mannequin ¬†

Why hello there 2015

Happy New Year!

This time of year has been challenging for me in the past two years as it has been met with troubling news followed by invasive surgery. Not this year! Aside from the general unpleasantness that comes along with the treatments I receive, my December and holiday season has been pretty normal.

Last night I rang in the New Year in some dive in Johnston (for anyone familiar with RI, I know right!?). I threw on my sequined skirt and glittered, tiny, top hat and had the best time. It was arguably one of the best New Years Eve’s that I have had in a long time. No cover charge, no crowds, no hype. Just a dive bar, a couple of friends, my handsome gentleman, decent music, and¬†dancing. (I also apologize to anyone that tried to contact me last night, I left my phone home accidentally before I hopped in the cab.)

I can’t put my finger on exactly why it was so perfect. I think mostly chance. Going to this place was a super last minute decision (as in decided 30 minutes before we went out) so we really didn’t have time to set expectations. No, wait, I lied. I’m a liar. We actually were very skeptical of this being fun and went with it on a hope and a prayer that it wasn’t a suckfest. Luckily we were in good company and thoroughly enjoyed ourselves. It was simple and simple is all that I needed.

An enjoyable New Years Eve is perhaps a good omen for 2015.

Since I was without a phone and subsequently a camera, here are the only pics I snagged:

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Whether you curled up in your sweat pants, froze to death in Times Square, or raged in a VIP lounge over $1000 bottles of champagne, I hope you had a memorable night with loved ones¬†(or if you don’t remember, have friends that are kind enough to TELL you about the night before instead of post evidence on Instagram).

To come:

  • I’ll be turning 27 years of age in a few short days. There will be festivities and there will be pictures. Stay tuned.
  • Cory and I will be hopping a plane in exactly one week to Florida to get away from this goddamn bitter cold. Dave, Chris, Mason & Alex- get ready!
  • I have a CT scan scheduled for next week. Per usual, fingers crossed for continued positive outcomes.
  • Big check up on January 13th in Boston, again, fingers crossed that all is going well.

Lastly, in the spirit of a new year I gave the blog a little makeover. Nothing crazy, some different colors and links at the bottom. Aesthetically pleasing? Yes? Do we like this?

Now go nurse your lingering hangovers. I told you not to drink Andre.