Yesterday I gingerly pulled myself up from the borrowed hospital wheel chair and stepped on the scale as protocol for my oncology check up. I was prepared to see a number that reflected my current state of frailty and weakness but I was not prepared to hear her said “okay, eighty pounds”. Honestly it scared me and I plopped back down into the wheelchair in disbelief. All I could think of is “Shit. I have a long road ahead of me.”

It’s not that a long road wasn’t glaringly apparent prior to that weigh in. It just served as a reminder that the past few months have left me beyond depleted. I am a twenty-nine year old trapped in the body of a ninety-five year old. My lungs are still surrounded by fluid, albeit less fluid than a few months ago. So my lungs need help too. Breathing fully can be a struggle, walking is a struggle, staying out of my own head is the biggest struggle.

Now let’s let one thing be clear, struggles aside I am beyond thrilled to be home. I received top notch care in the hospital from all of my loving nurses, CNA’s and docs. But nothing compares to being in your own familiar space with peaceful silence and comforts unique to you. Most of all, I am just happy to be back living with Cory in this little home we have created together. Just sitting on the couch at the end of the night in front of the television. It’s comforting to turn to my left and know he’s there smiling back at me, making bad jokes, and oozing love and compassion in ways that deserve to be described in its own entry. There is no replacement for being away from your love.

There is another aspect to being home that one doesn’t think much about until you’re actually there. After two full months in bed, medicated, sedentary, catered to hand and foot being home means that you are now doing these tasks yourself. As my doctor reminded me when I was venting how hard this all is I went from zero to doing twenty times more than I have in months. These aren’t huge tasks either- walking from the living room to the kitchen. There have been times I made it to the fridge and just sat on the floor for a few minutes to recover before heading back.

I have been so fortunate to have Cory help me in all the little ways that matter and add up. He never complains. My parents have also made a special effort to be with me a couple days a week when Cory is working outside of the home all day. Not only have they helped nurture me and keep my head on straight, they also have done a tremendous amount of cleaning, organizing, and shopping to make both of our lives easier. I can’t imagine doing this by myself. If I still lived alone it would be bad news bears.

Finally- sleeping and eating. Right now I can only have clear or full liquids. As soon as something goes down my throat it just trickles back down my g-tube into a plastic “bladder” that sits beside me on the floor. Let me tell you that it is REAL strange to see your stomach contents just float by you through a tube just minutes after ingesting it. But keeping the tube open isn’t what’s going to help me gain back my weight and strength. The goal of getting rid of the g-tube will have to be taking in something like a yogurt smoothie or ensure, clamping off the g-tube so my body absorbs and processes it naturally, then staying clamped for a few hours without getting nauseous or throwing up.

Clamping is a mental game. I become too obsessed over it, how long I’ve been clamped, staring at the clock. Dr.Robison suggested doing it when I watch a movie or have some sort of distraction. Slowly but surely I will get there because even though I am grateful that it’s helping me, I HATE it and need it to be gone as a piece in the quest for modified normalcy.

Another true mental game is sleeping. I have only slept fully through the night once and I barely can nap during the day. This is no help when it comes to regaining my strength. I’m exhausted and captured by insomnia. The nights are long and to add complication, I am hooked up to a big bag of TPN AND the gtube so getting around the house when I can’t sleep is daunting to say the least. I’ve tried sleep aids and medications (assuming they stay down) but nothing seems to help. Someday I’ll regulate but for now- these are some longggg days.

So there you have it. Life at home one week out of discharge. It could be better, it could be worse.

I just need to remember everything else I have overcome in previous years, when I go to that place of defeat in my head . None of it was easy or quick and it all took work and patience. This is no different.

Lastly, as always I am grateful to those that have checked in on me, sent gifts, spared a kind word. It means so much to me.

So what’s next? Just adjusting to home until Feb 23rd when I see my doctor again and have my next round of chemo.

I think that’s all I can say for now. Sending love to you all.

I stopped writing recently because everytime I tried I lacked the words to capture my experience. What could I say? 2 months in the hospital, 4 small but significant procedures (chest tube, gtube, 2 denver drains) within a month. It is all just too much mentally and physically. Fighting this disease just keeps getting more difficult. 

I returned home 2 days ago. It has been nice to be at home with the person I love. It hasn’t been an easy transition. I lack the strength and energy to do all that I need to do to care for myself. I am so fortunate that Cory is a selfless angel. 

My first day home was awful. I couldn’t sleep, pain, nausea, vomiting at least every hour even with a gtube. I felt like I was at the end of my rope and nothing would ever be the same. Thank goodness for the emotional cheerleading I desperately needed from my family and Cory. I was in better head space today and felt able to do a lot more.

I don’t know what is next aside from a lot of visiting nurse appointments. But please know I’m home and safe.

May I get through the next day, hour, minute.

I want to first thank you for your ongoing outreach and concern regarding the state of my health. It certainly means a lot to me.

A more typical Jess would be chronicling the hospital play by play, looking for the perfect google image to compliment. Buuuuttt let’s face sometimes you need to take a step back and process your own thoughts and feelings.

Where we left off was whether or not it was right to place a G-tube. Long story short there are a few ways a gtube could be placed, but none of the three options would be deemed safe. Ultimately no surgery was had and a few days later I was sent home. We had been NPO for a month so it was expected that I may throw up occassionally but hopefully once the new chemo kicks in my symptoms would subside.

I was home just one night before I began vomittiming more in one evening than i ever thought was humanly possible. I called my parents around 6:30am and without a second thought they jumped in the car and drove almost 2 hours on Christmas to get me only to drive another 45 mins to get me back to Women and Infants. They are truly saints.

On the back end Sheila, my doctor, caseworker, and one of my nurses were all prepped for my arrival. I have never been so happy to be in a hospital. After one night of feeling totally exhausted and defeated to finally arrive in a place that could bring me at least momentary comfort.

So where do we go from here? Im not sure. We have bumped chemo up one day to tomorrow. Aside from that I truly have no more information.

Thanks for being patient with me as I navigate this difficult time. I have been slow with returning texts and messages but please know I appreciate them from the bottom of my heart.

I’ve found that in the hospital world there is a lot of “hurry up, slow down.” There has been a whole lot of that since I have last written.

Actually, my last post would have you thinking that by now I have had a g-tube placed. Well, at the time that plan was true. But per usual medical plans change and can do so with little warning.

*Before I really dive in I’m going to show you a quick difference between an ‘NG tube’ and ‘G-tube’ Without this disclaimer I fee like this entry could get a little confusing.

• NG Tube: Naso gastric tube aka, nose hose

  • Sucks stomach juices out of body to let the bowel rest. Does not require surgery to be placed or removed.

• G-tube: Gastronomy tube

  • small tube that sticks out of the skin on the abdomen that is connected to the stomach. You can still eat (semi) normally but it allows you to manually release the contents on your stomach should you feel obstructed and need relief. This should certainly cut down on these month long hospital stays.

Basically what had happened was we were planning to have the g-tube placed sometime between 1pm and 5pm last Thursday. This didn’t end up happening but it wasn’t until a few days later that I learned why. To be fair, someone could have easily explained it to me that very day but some of my meds leave me foggy and forgetful (and hilarious if you happen to catch me in person before bedtime).

A huge concern with any abdominal surgery is upsetting/disrupting the bowel. One pin hole perforation and you could be a goner. To be certain that the Rhode Island Hospital people had the space to insert the g-tube without harming the intestine they asked for another CT scan (they felt the one from a week ago was too old).

This morning during rounds the doctors explained to me that the people at RIH did not feel it would be safe to do based on how my bowel is configured at the moment. There is not enough space therefore the risk is greater than the reward. I appreciate their honesty in putting my safety first.

Right now we are waiting to hear from, our secondary plan, a gastroenterologist that has successfully placed G-tubes using a different procedure. He is supposed to consult with us today or tomorrow so let’s hope for sooner rather than later because this g-tube business is what is standing between me and home.

That’s all I know for now. The goal is to be home by Christmas so let’s hope so!

Thank you to everyone that has continually reached out, I apologize if you have not yet heard back from me as some days are foggier than others. Thanks for the gorgeous flowers, blankets, and gifts. Thanks to the nurses that show love and compassion and help me to stay upbeat. Thanks to my big brudder and his girlfriend for spending their short holiday on the east coast with me in the hospital. I may have been really out of it but your humor and love is infectious and did me a lot of good. A big thank you to my co-workers for making me the sweetest video (I won’t embarrass you by posting it).

Lastly, thanks to my parents and Cory for rearranging your lives continually to make sure I’m okay and have everything I need.

On a final note, please keep the positivity going because I need it desperately right now.

Journal keeping is a treasure of perfectly phrased feelings that we may grasp at but never quite get back to without documentation. Today, with a heavy heart, I had to make a choice that I did not want to. I had to make a choice because if know that my body needs me to make this choice. I was faced with the same decision earlier in the year and emotionally and physically was in a different headspace:

I’m going to cut any and all suspense because I’m tired and emotionally drained.

Tomorrow I am having surgery to get gastric tube (g-tube).

But here are my thoughts on the same difficult decision in May.

“It’s not that I think that cancer is getting out of control. I’m back on chemo and I really believe that it will help the situation with my intestines. The fear (granted possibly irrational) is that despite our best efforts, my intestines just won’t work properly. Further measures if this NG tube/bowel rest effort didn’t work would potentially mean a g-tube in my stomach or colostomy bag. Though I’m sure many people live great lives with a g-tube or colostomy, I just can’t come to terms with that as my reality. We definitely are not there yet, but it has been mentioned as a worst case scenario and that frightens me.” May 2016

Today, one day after a second failed clamp trial (the one where we clamp off the NG tube from nose –> stomach. I felt kind of empty in that I just had nothing left to give to make my intestines work like most other people walking the earth. I was no longer afraid of the g-tube alternative because my body in a sense already gave me a little wink to tell me what it needed.

I can’t do this all by myself on prayer and bowel rest alone, and my poor little gut can’t do it on his own either so we’ve agreed to get help.

I’m not sure what time the procedure is tomorrow but please gather all of your positive energy and send a little in my direction if you can.

I’ll be sure to post more in a few days as I recover.

Thanks again for all of the love.

Hindsight is 20-20, huh? Exactly three Monday’s ago I had come home from work curled into a ball on our bed in pain and silently repeated in my head over and over “please don’t let me have a bowel obstruction.”  In my heart of hearts I knew that I did but I also knew the severity of certain symptoms to look and genuinely thought I could resolve it at home. Unfortunately this problem was and continues to be much bigger than me.

Whether I chose to go to the hospital five days sooner it wouldn’t have changed anything. The fact of the matter is that the time we wasted not being able to use Carbo gave time for disease to grow and put strain on my intestines. Imagine a little piece of straw covered in bubbles. The straw being intestine and the bubbles begin little tiny tumors. As the bubbles grow the create tighter and tighter regions in the intestines. This will not resolve until we find the rigth chemo to help attack it.

We truly hope that Doxil is that answer we’re looking for.

SO I know you’re just dying to know about my bowels…because? who doesn’t?

I was going to make a cheeky joke about the hot sauce joke from Dumb and Dumber when it dawned on me that this gif is the actual personification of my small intestine gearing up to ruin my life.

Bowel Obstruction:

far as the obstruction goes, right now I still have the NG tube in my nose. The last day I wrote I was excited about the prospect of trying out clear liquids. Although I did a great job with the tube being clamped off, it was just too soon. I tested out a few sips of broth, tea, and Ensure Clear. Ultimately I became nauseous and couldn’t keep it down.

I was pretty disappointed and down over not overcoming this obstacle but  I had to just be at peace with the fact that my body isn’t ready. I’ll get all the nutrition I need from TPN and as much as it pains me to have to say this, I have plenty of time because I will have to go home on TPN until I can take in enough nutrition by mouth. I hope relearning to eat is a quicker process than it was over this past summer otherwise I can guarantee you that will be sobbing over every tray of christmas cookies you offer. Feel free awkwardly console my overreaction to your snicker-doodle.

And yes, the tube will stay in my nose until discharge. 😦

Breathing: 

Again, wish I had better news but things haven’t gone as straight here as I had though. The other day I was scheduled for another lung tap because my best is basically more liquid than actual lung leading to compressed lungs and shortness of breath. I’ve been finding that I’ve needed to wear the oxygen mask overnight each night now.

I sat through another lung tap that was not as successful as we had hoped. It released a little fluid but due to pneumothorax (air where there shouldn’t be) we had to stop. The next day Dr. Robson told us it was time Denver Drain:

Not to  be confused from that Goddamn John Denver.

SO what’s a Denver Dam?

There is a small catheter that is surgically placed on my right side rib-cage that can be attached to a collapsable bottle or bag. When I feel as if the fluid in my chest is accumulating too much and I become short of breath (as I had a few weeks ago). I can bypass the lung taps and drain the fluid myself. It’s not cute but it’s healing well and they’re managing the pain. One upside to the Denver Drain is that it’s reversible so maybe, just, maybe this doesn’t have to be forever. There are some downsides so I’m not

Since the surgery they have moved my room to an AMS room to monitor my heart rate and vitals at all. Ao should you feel like visiting over the next few days just ask the front desk for the room number. I am still very tired throught the day so  I do still ask that you check with myself, Cory or my Family if you want to come by,

Lastly,

I’ve been so touched by kindness that I need to especially recognize today Sheila Enderby who went out and got a secret friendship tattoo. This week alone I’ve been down, cranky, unpleasant, uncertain, needly, afraid. I just think that despite all she just let me be human and that was all  Ineeded then,

We are making some progress with the bowel obstruction, but I feel that there will be a few more days that I will need to stay here. It appears that with each new admittance to the hospital, the longer they seem to keep me. I mean, it makes sense. We’ve experienced on multiple occasions the false security of showing improvement only to be readmitted just 24 hours later. Slow and steady has been the approach with this stay in order to best avoid the hospitalization revolving door.

(Clearly not a true representation of said revolving door)^

The time I have spent here this visit has been a bit more daunting than I anticipated. It’s not as if I thought it would be a cake walk but there were a few things that had to be tended to that I wasn’t expecting.

A quick recap of events:

• NG tube placed (nose hose)
  • Throat is beyond raw, often hard to speak
  • Cepacol cough drops have been mega helpful
• TPN
  • Back on IV liquid nutrition since I can’t eat or drink by mouth (yes I am torturing myself with pictures of pizza and junk on Instagram)
• Thoracentesis
  • Drained one full liter of fluid from my right side that was compressing my lungs  (3rd lung lap in 3 weeks).
  • My blood oxygen is still on the lower end so I have opted to sleep with oxygen the past few nights (as if I don’t have enough crap shoved up my nose right now).
• Blood transfusion
  • Hemoglobin was low yesterday so they gave me two units of blood through a peripheral line
  • My veins are the worst and the peripheral line was very difficult to place. Through lots of patience, tears, and one determined AMS nurse we got there.
• New chemo began
  • Doxil infusion lasted 2 1/2 hours
  • No adverse reaction
  • Thumbs up so far

I’m honestly too exhausted to really go into detail with everything that has transpired this week. All I can say is that I’ve had excellent care, great support from loved ones, and am optimistic that the next few days will show a bit more promise. There is a little light starting to shine toward the end of the tunnel. A doctor, just minutes ago, told me that we were in a good place to do a clamp trial and take the NG tube off of suction. So basically the tube is still in but it’s not doing anything. If I can go 24 hours without nausea, vomiting, issues, we may get closer to getting the tube out and perhaps even going home.

On that joyous note…

Thanks to those that have reached out and visited. You know how much it means to me.

Even with this exciting news I am asking for no visitors except for immediate family and Cory at this time. As mentioned before it is very hard on my throat to talk extensively so texts and messages are welcome instead (at least for now) 🙂

Let’s think positive thoughts for the next 24 hours!

Give me some credit where credit is due. Technically I made it through the holiday without a total disaster. I was; however, admitted to the hospital the day AFTER Thanksgiving.

Not totally surprising, a CT scan revealed that the pain in my abdomen is attributed to yet another bowel obstruction. They don’t see a mass around the area that is obstructed so they aren’t totally sure as to why the intestine is kinked up. 

As I mentioned briefly in the last post, I have had some abdominal pain since Monday so I put myself on “bowel rest” and only took in clear liquids like juice and broth. On Thanksgiving I did go back to solids in very small portions but I suspect it was a bit too soon. The pain increased that evening and the following morning I had a few episodes of vomitting. We knew at that point that it was time for the hospital. My incredible parents packed up and drove the 2+ hours to Women and Infants so I could be at a hospital where they know me (and my super complicated body).

I’ve been here since Friday and cannot take in food or drink by mouth. I have an IV keeping me hydrated. They want to place an NG tube but because it has been difficult to place in the past we need to wait until we can do it at Rhode Island Hospital with imaging.

All I can say for now is that they’re keeping my nausea under control with round the clock Phenergan and treating the pain as needed through the IV. The meds make me pretty sleepy so aside from reading a lot and a little TV I’m sleeping quite a bit. That said, I just ask that any visitors call or text before they come. I’d hate to be a sleepy during a visit! All things considered, I’m not in bad spirits at the moment.

That’s all I have for now. I’ll keep you posted when more information comes to light.

Thanks to everyone that has called or dropped a line to check in 💜

(P.s. props to Sarah Breen for making a florist have to write “bowels suck” on a card) 

My life with cancer began exactly four years ago. I’d like to think that in reflection of everything we have overcome in the last four years I’d be in a place to articulate some passionate battle cry but I’m just not there today. Maybe tomorrow, or next week, or next month, but the past few weeks have simply worn me down.

Although I’m feeling much more positive today than I have in recent days, I can safely admit that I’ve had a steady case of the Eeyore’s.

Early fall I was just feeling some welcome momentum, like I was hitting my stride again. Unfortunately, because cancer doesn’t really give a crap about your personal priorities, a string of challenges started to creep up during the heart of registration period (all my academic advising homies can collectively cringe here).

This includes:

• Suddenly becoming allergic to one of my chemo drugs
• Fluid collecting around my lungs. This was rectified by two horrible lung taps that yielded a total of ~ 1250 ML of fluid  between the right and left side.
• Encountering some intestinal pain as of Monday (that I refuse to let become another full blown bowel obstruction).

I’m not saying it’s the worst set of circumstances, but on a spectrum of “Annoying” to “FOR THE LOVE OF GOD, WHY?!” it was a solid “Can I please catch a break? PLEASE?”

More recently I’ve been physically so exhausted and with that I’ve fallen down the rabbit hole of intrusive thoughts which is never a fun place to be. It’s that place where you feel powerless over what is happening to you and I couldn’t seem to shake that sense of “yuck”. None of my favorite comforts seemed to help. I couldn’t focus enough for deep breathing or meditation. I couldn’t catch my breath after walking 10 feet so exercise wasn’t realistic. Ativan is great to quiet the mind temporarily but when you wake up, the overwhelming thoughts must still be dealt with.

Thank goodness for the plethora of “Christopher Robins” in my life because the only thing I could do that gave me any relief was cry and talk it out. I cried to the people that I love and sought some reassurance.

I didn’t want anyone to cheerlead or tell me that I’m brave or that it will all be okay. Because what is bravery, really, when you didn’t sign up for this? I just wanted validation that how I’m feeling in this moment really sucks.

My loved ones came through and as always helped to pull me up from the vortex of unproductive thoughts and back to more neutral state of being.

As bleh as I have been feeling, I continue to feel grateful for the people in my life that never waver. I know that you feel powerless too, even more so than me sometimes, and I would not be here four years later without that unconditional love.

I’m also grateful that we have another treatment option available before turning to more clinical trials. I will soon be starting a chemo infusion called Doxil that is typically used for people like me with recurrent ovarian cancer.

Pro’s:

• It is administered over 2 1/2 hours the first time and only one hour for each infusion after that. No long days in the chemo chair!
• It is administered once every four weeks. So basically I’ll only have chemo once per month. Woo!
• No predrugs (ex: Steroids, Benadryl, etc.)
• My hair will grow back 🙂

Possible Side Effects:

• Mild nausea/vomitting (although I don’t get the sense that it’s as bad or common as other treatments I’ve been on)
• Mouth sores
• Hand-foot syndrome- “Hand-foot syndrome appears on the palms of the hands and the soles of the feet as redness, swelling, rash, pain, tingling or burning sensations, or peeling skin. It appears after 2 or 3 treatment cycles, but may occur earlier.” Yikes.
• And per usual lowered white/red blood cell counts

We’ll see how it goes. Dr. Robison feels that in terms of quality of life, this is our best option right now.

Like I said earlier, I don’t have an impassioned statement that starts with “against all odds…” and ends with “AND I’LL BEAT THIS!”

Nah…

I’ll wrap this up with a reminder from my mother that we don’t know how the story ends. We just keep walking, one foot in front of the other. And we don’t necessarily know where we’re going. We just go. Taking every minute as it comes even when we are exhausted to our core.

What my tired yet hopeful self knows to be true on this four year anniversary….

Four years later, you still cry it out when the pain overwhelms you.

Four years later, you accept help when you know you only have so much to give.

Four years later, you hug your loved ones a little tighter and lean into that shining light.

Four years later, you try your hardest to absorb the pleasure in what most fulfills your soul.

Most importantly-

Four eventful and uncertain years later, the best case scenario holds true- you’re still here.