A few new scars and a discharge

It’s been a hell of a few days. Things started looking up until noonish on Thursday when the nausea kicked in, again in full force. They had to move my IV and no one could find a good vein- after a week in the hospital my veins were tapped out. If you had looked close enough with a microscope I’m sure you would have seen my veins carrying signs that read “on strike!” It took over 2 hours, 3 nurses, and 1 anesthesiologist to finally get an IV into my arm. During that time I couldn’t keep any nausea or pain medication down nor could they give me anything through they IV because, again, they couldn’t get it in my arm. I honestly don’t think that I’ve ever felt so helpless in my life. I know this sounds dramatic but getting stabbed with a needle 12 times between vomiting with zero relief really doesn’t make for a situation that you feel in control of whatsoever. Finally they got the IV in and were able to give me some nausea meds and start my pre-chemo drugs. After a mighty struggle we were able to start chemo as planned.

In the wake of the Vein Massacre of 2013 I finally caved and agreed to a second port. Yesterday I went under the knife again and they installed a central line under my clavicle. This port will allow them to give me IV fluids, administer chemo, and draw blood. No more needle pricks! I’m praying that I don’t have to experience another extended stay in the hospital, but if I do- I’m prepared now. What I was less prepared for is the reason that I was hospitalized in the first place- the obstruction. After speaking with my oncologist she explained that I may be more at risk for these obstructions because of the way my abdomen healed after surgery. She said the scar tissue in my case formed a shelf that is essentially holding up my intestines. They are squished into 1/6 of the space that they should be simply because my body healed that way. She said she had never seen anything like this before. They won’t take action until I’m done with chemo because that is priority but I may need surgery in the future. I’m tired of being a medical anomaly- it never works in my favor.

Enough bad news- one fun surprise that came of this week was a visit from the one and only Adam Sultaire! He heard how horrible Thursday was and without a second thought he left work, hopped on a plane, came straight to the hospital and stayed with me all night. Best brother ever. I also cannot even begin to thank my parents enough for being away from home for the last 10 days to be with me in the hospital every day. My family is such a blessing.

Time to pack up and go home- I’m getting discharged 🙂

Love and gratitude,

Jess
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Set-backs

It has been a while since my last update- I wish I could deliver better news. For the past 7 days I have been in a hospital bed at Women &Infants in Providence. A week ago prior to chemo I had terrible abdominal pain and was throwing up all night. I saw a doctor early before chemo last Thursday and he assured me it had nothing to do with my cancer getting worse but was a complication of my first surgery. An X-ray confirmed that I had a partial blockage in my intestines due to adhesions from the surgery. Apparently this is common and not preventable when you have as much scar tissue as I do.

They followed through with chemo last Thursday then promptly admitted me to the hospital. The next day they put an NG tube in my nose (while I was awake- most traumatizing thing I’ve ever had to do). The tube was in place to suck the bile out of my body to give my intestines and bowels a rest. They took the tube out a couple days ago when I started to show some improvement. Unfortunately, I’ve also been combating the effects of the chemo that I received on Thursday and Saturday. Lots of nausea and vomiting this time around. Miserable. I’ve lost a lot of weight…I’m a whopping 89lbs today- it’s disgusting. Can’t wait for my appetite to come back so I can regain those pounds I worked so hard to gain back in December!

The plan is to do chemo again today and stay one more night for observation. If all goes well, I’ll be home tomorrow! I’ve been blessed with incredible nurses and CNA’s all week but despite my great care I’m starting to get homesick.

I’ll keep you posted with my progress when I know more.

With love,

Jess

Surgery #2

Thank you for the continued well-wishes. It has been exactly 11 weeks since my diagnosis and I am still feeling the love. It’s hard to believe how much I have experienced in 11 short weeks (it has felt more like 11 long years). Every day has had ups and downs and with your support I have been able to keep moving forward.

My week started out great because I was able to go back to work for three full days. I was so thrilled to be back in my office with my co-workers and especially interacting with students. Three days of pure joy.

Yesterday I had another surgery to insert a port into my abdomen. Basically this is a small flexible tube inserted under the skin under the right side of my rib cage. This will serve as a better means to deliver the chemo drugs. The needle will still puncture the skin but they won’t have to look for a “good” vein as it goes right into the port. I will start this new chemo regime next week on valentines day.

So I underestimated how horrible this surgery would be. So much in fact, I was planning on working today. When I told my director I’m pretty sure he thought I was insane and told me to stay home. So Aaron, if you’re reading this- you were right. There! I said it. It worked out well because the university is closed for snow today but I honestly have no idea how I would have worked today. I am in an incredible amount of pain.

I have two incisions from the port and a third unexpected incision. My stomach was getting distended again (like it did prior to my diagnosis but not quite as large). My oncologist said she would go in there and look. She made an incision through my belly button and drained fluid that had accumulated in my abdomen. This fluid is typically produced by tumors but she said she was unable to see any. This is both encouraging and alarming. I’m glad she didn’t see any new tumor but I still don’t know why I’m filling with fluid again. It is going to be a “wait and see” kind of thing for now. We will have to keep monitoring my CA125 levels and I’ll worry if the levels aren’t going down or even worse- if they go up (who am I kidding? I’m going to worry no matter what).

I’m glad that I have great care here in Providence but I owe it to you and especially to myself to be honest in these emails. I’m pretty angry at my circumstances today. All of these physical hurdles are still so emotionally draining. It’s one of those “why me? I don’t deserve this” kind of days. The physical pain tends to bring out these feelings more. It’s hard to put on a good face all the time. I’m not losing faith by any means, I’m just frustrated and tired of not feeling and looking like myself.

I want to end with a little story about yesterday that furthers my trust in my new oncologist. Prior to my surgery they had to take more blood and couldn’t find a good vein so they were digging in both arms. After that the anesthesiologist couldn’t find a good vein so they too were digging, digging, digging until they ultimately put the needle in my hand. I was already stressed about the surgery and by the time this was all over my nerves were shot. When my oncologist showed up I was a mess- completely bawling. She stopped everything, sat down on the stretcher, threw her arms around me and just hugged and reassured me in such a tender almost mom-like way. Her level of bedside manner is unmatched. I later found out from a nurse that my oncologist has been through her own life challenges. Last year she lost her 3 year old daughter to cancer. Her commitment to aggressively treating cancer shines through in her planning and especially through her interactions with both myself and my parents. I am sure that I am in the best hands.

For all of you in the north east- stay safe in the blizzard.

I’m home!

Yes I’m writing during the Superbowl…The Pats aren’t playing and I have no money tied up in this game so I’m less than invested in this particular Superbowl. I’m hoping that the 49ers win this one out of concern for a dear coworker of mine. I’d hate to go into work tomorrow and watch a grown man cry.

The last couple weeks have been eventful for me. I had my second round of chemo, the last chemo that I will be receiving at Yale. The chemo day itself went smoothly but unfortunately this round was not quite as easy as the last time. My symptoms lasted for over a week. Lots of abdominal discomfort, body and joint aches, and horrible insomnia. I am now just starting to feel better. To add insult to injury a few days before my return to RI my apartment was broken into. My poor roommate had her laptop and cash stolen. As if we both weren’t stressed enough already. I can only imagine the level of bad karma that our burglar will experience after robbing an apartment belonging to a cancer patient. Hope it was worth it buddy! Enjoy your crack cocaine.

In lighter news, I’m back in Providence for good! I return to work tomorrow and I am thrilled. I had a meeting with my supervisors last week and they couldn’t have possibly been more understanding and supportive. I believe that my transition back to the workplace will be relatively smooth thanks to the unbelievable support of my supervisors and colleagues. I’ll just be happy to be somewhere for 8 hours a day where I’m thinking about something other than my illness.

Thursday will be the big day that I have my port put in. It is a relatively short outpatient procedure but I’ll be asleep for it (thank goodness). I’m not thrilled about this at all. Nor am I looking forward to the amount of time spent receiving chemo tripling in my near future (fun fact- my next treatment is on Valentines Day. Nothing says love like an IV in your arm for 4 hours). I have the same feelings of anxiety and fear that I had prior to my first round of chemo. I feel like I’m starting all over again in the midst of an already physically and emotionally taxing experience. I just need to stay focused and remember that all of the unpleasant things that I have to endure are in place to make me better. This is a solution, not a problem. It’s time to dust off my game face and put it back on.

I hope everyone is enjoying their Superbowl Sunday and hopefully copious amounts of buffalo wings.

Love and gratitude,

Jess

(OH! P.S. I shaved my head. It’s kind of liberating)

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