First Chemo Eve

Thank you for all for the continued support as I begin the first of my chemo treatments tomorrow. The cards, flowers, gifts, food, emails, phone calls and texts have been key in keeping my spirits up. Good thing chemo is 5 hours long because I have a TON of thank you notes to write. If I finish before 2014 it will be nothing short of a miracle.

On the leg front- every day we are seeing small improvements. I have been seeing both a physical therapist and an occupational therapist twice a week which has helped tremendously. During a recent physical therapy session my therapist witnessed a full muscle contraction during one of my exercises. This is a good sign! My OT noticed improved strength in my knee- also promising. Still with the cane but hopefully in a few weeks we will see vast improvements.

So in the spirit of keeping my head in the game, mom, dad and I went to a salon last week that specialized in wigs (great recommendation Mary!). The owner, Randy, was kind and encouraging. While I originally envisioned this visit filled with tears and stress over my soon-to-be balding head, Randy and my parents made sure it was a fun experience. Many laughs were had when Randy tried to turn me into a blonde. I did not pull it off well and I have pictures to prove it. Luckily we did find a sassy long brunette wig with auburn highlights that I took a liking to. It’s longer than my normal hair and has way more volume….but what the hell? If I have to wear fake hair I might as well pick something more fun than my own. Randy was also kind enough to share that insurance covers one wig per CALENDAR year. Good timing on my part! I’m going back next week to scoop up a second one in 2013. Overall the experience was great and Randy even cut my hair free of charge. I cry often over the issue of hair loss but for a few hours this helped. I’ll take it.

So tomorrow is the big day. Leading up to chemo the emotional experience has been much like waiting in line for a roller coaster. At first you’re like holy crap I have to do this. Why the hell would I put myself through this?! Then your fears subside a little and you amp yourself up in an attempt to hide that “scared shitless” feeling. So you wait and wait and find ways to distract yourself until the rickety cart pulls up and you have no choice but to get on while your stomach tries to jump out of your mouth….yeahh I’m about there right now considering that its after midnight and I’m writing an update T-minus 11 hours before chemo (the steroids I just had to take aren’t helping the cause haha). I’m anxious and scared and just want to get the first round done with so I know what I’m up against. I’m hoping its bark is worse than its bite.

On that note I’m going to attempt to sleep…or at the very least some tossing and turning in the dark.

Goodnight supporters! Sending love and gratitude to you all.

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Chemo

Hi Everyone,

I just received a call from Yale New Haven confirming that my first chemo treatment will be on December 31st. Do you think the hospital frowns on popping champagne? (KIDDING)

I think it is appropriate to say that my New Year’s resolution is to beat cancer ūüôā

(and to gain 15 lbs…keep the holiday treats coming!)

With love,

Jess

Reality sinks in

First, as always, I would like to express my gratitude for everyone on and off this email list that have reached out to me. I think I need it more than ever right now.

Many have commented on my strength and bravery. I think it’s just because I write these updates when I’m having a “good” day. The truth is that I do not always feel that strong and brave. I thought that after I left the hospital a switch would flip and I would feel so much better in the comfort of my own home. The last few days have proved that my expectations have clashed with reality.

Shortly after I wrote my last update my leg buckled and I fell. As a result the last few days have been spent walking with a walker although I have now graduated to a cane. This was (at least in ¬†my mind) a big physical and emotional set back for me. The physical therapy has most definitely been improving the motor function in my left quad but it’s a slower process than someone as fiercely independent as me would like. Once the motor function is back the sensory will come back in time. It will get better but it is frustrating. Between that and the digestive issues that resulted from the surgery let alone still having to process my situation- this week has been physically and emotionally taxing. At one point I broke down to my mom and visiting nurse and said “I just can’t take one more thing”. My nurse responded with a simple “Yes you can. You can take one more thing”. It’s true. I’m not actually as weak as I feel right now and I will be able to handle whatever else is thrown at me but right now I’m just tired.

I suppose I should include some uplifting news since I just bummed all of you out for an entire paragraph. Last night was the first night I slept soundly since December 3rd. The days have felt like weeks simply because I cannot get comfortable enough to sleep. Luckily last night the universe cut me a break and allowed a healthy good night’s sleep. THANK HEAVEN. (Must be because of all of the good company that tuckered me out yesterday- shout outs to Sarah, Amie and of course my amazing cousin Sara “Buster Brains” Kaplan)

So next on the horizon is meeting with my oncologist (my life saving angel) tomorrow. We will decide tomorrow the exact date of when my chemo treatment begins. I will keep you all posted with this information.

That’s all I have for now.

With love,

Jess

Freedom

This one will be short and sweet (at least in comparison to the others). After seven long days in recovery at Yale New Haven hospital I was finally appropriately released today after having met all of my milestones. My doctor was appalled that they tried to force me home before I was ready on Sunday. (I would be happy to reveal the name of the doctor that tried to send me home if anyone would like to stand outside of Yale and casually throw eggs at him).

¬†I am still in pain from time to time but have my good friends Motrin and Percocet to help control that for the time being. One of the bigger hurdles is just the constant state of discomfort. After all of the trauma my entire body has experienced over the last week it is hard to sit or lay down and just be comfortable. I am hoping that this subsides sooner rather than later. Despite my discomfort I’m working really hard to regain my strength. I am able to walk around without a walker or help and get in and out of bed by myself. It’s not easy but I’m getting there. I will have a visiting physical therapist that will help in this process.

My doctor also told me that the surgery was very successful but we will still need to do chemo to be sure that all of our bases are covered for the cancer cells that remain. We can start as soon as one week but to be honest I’m not physically or emotionally ready. I have decided that I am going to give myself a little more time to bounce back from the surgery and process the reality of chemo. That being said I plan on starting my first cycle between Christmas and New Years. The plan as of now is to do 6 cycles of chemo. I will go once every 3 weeks for about 5 hours each session. If I start when I plan to start I could possibly be finished by May and hopefully have hair starting to grow back for the summer. This is timed out well because I know two beautiful couples that expect me to be shaking my tail feather at their weddings in August. I intend to do that just that ūüôā (Katie/Bobby/Molly/Josh- when it’s time for the bouquet toss I make NO promises that I won’t throw my wig into the crowd of bachelorettes just to mix things up).
That’s all I have for now. Thank you again for all of the love, positivity and prayer. Keep it coming.

That day I was almost booted from the hospital…

The last two days in the hospital have been quite eventful. They removed my catheter, epidural, and NG tube (tube running from nose to stomach to suck out all the liquid). These are all huge milestones that I am very proud of though some come with a price. I had no idea just how much the epidural was managing my pain (my happy button). Once that came out I started taking all of my pain meds through an IV. One is scheduled every 6 hours and the other is as needed so I need to stay on top of it. Nothing I am taking compares to how amazing the epidural was. Today I’ll start taking Percocet (and no I won’t sell any to you- that means you Mom!)

Now that the catheter is out I need to get up more. Moving and twisting to get out of bed is incredibly painful and when they’re pumping a liter of fluids into you every hour the bathroom trips become more frequent. So although I’m getting up more I’m also experiencing more pain. Luckily my nurses are very good at ensuring that the pain is under control as soon as it flares up. Although I oddly enjoyed the laziness that a catheter allowed (weird right?) at least I’m slowly gaining back my independence to a small degree.

The best part of my week was when the tube came out of my nose. My sore throat went away and it allowed for me to move to a clear liquid diet and now a regular diet. Please remember that until yesterday, I hadn’t had solid food since Sunday. Tuesday I wasn’t even allowed ice chips and Wednesday until Saturday was only ice chips. I’m convinced that¬†line “TONIGHT WE DINE IN HELL!” from the movie 300 was written to describe my dietary restrictions this week.

Since going on a regular diet I’m slowly reintroducing soft foods to my delicate belly. Yesterday I was able to enjoy oatmeal, soup, toast, yogurt and some pretty impressive Mac n’ cheese. Yale has a “room service” approach where you have an actual (extensive) menu¬†and order whatever you like between 7am and 7pm. It’s amazing and the food is delicious. Well done Smilow Cancer Center!

So for those of you that are still reading (I know I tend to word vomit in these updates) I have a bone to pick with health insurance companies. So basically the hospital administration wanted me to be discharged today. Dispite still having no feeling in my left leg, not having a full day on a new oral pain medication, not yet seeing a physical therapist, having both legs swollen with fluid (Adema)¬†and experiencing immense pain every time I¬†merely get up to walk 5 feet to the bathroom disconnected people in suits think that I’m ready to do backflips out of this place. I honestly need another day. One of my nurses was kind enough to sit down with me and help me write down all of my arguments to stay an additional day. When a doctor that I have never worked with before came in to deliver the news I gave him all of the compelling reasons why I need to stay. He was so cold and had no regard for my feelings- just the bottom line. He might have well have just said “tough shit” to me and left. I was devastated. You have no idea how important one more day of care is for someone in my position. Luckily my nurses rallied and pulled every string they could. Ultimately a physical therapist examined me and made sure this doctor knew that it was unsafe for me to go home today. My dead leg saved the day! I will likely be going home tomorrow but at least I’ll have more time to get the support that I need in place.

I am certain if a health insurance executive was gutted, sewn back up, medicated and sent home abruptly like me they would be singing a different tune. Until that happens I don’t think anyone high up in those positions will ever see me as more than a dollar sign. It was a disheartening realization. Thank goodness those that work close to patients give their hearts and souls to us because those are the true healers, NOT the people that pay for it.

I am glad my family and I spoke up for what was right.

Hospital: Day 4

Hello everyone,

Just letting you know¬†about all the shenanigans I’ve gotten myself into in the past few days. Ok- maybe less shenanigans and more progress.

My brother Adam gave you a great update. As he said surgery went well and after 6 long hours on the table (which I could only imagine was beyond stressful on my amazing parents) the surgical team worked until I had no more VISIBLE tumor left. They removed all of my reproductive organs as well as the omentum and my appendix. They also were able to scrape the small amount of tumor from my diaphragm and liver. Finally they removed a small part of my bowel and reconnected it.¬†Though I’m not yet cancer free, I’m proud to say that I’m basically tumor free!

After leaving the OR I recovered over night in the Intensive Care Unit. I have some assistance with a few of my normal functions right now. Because of the bowel reconstruction I have a tube going from my nose to my stomach that sucks out whatever is in my stomach. So this means that while my bowels are healing I’m on the Kate Moss diet of ice chips and more ice chips. MY GOODNESS I would do anything for a cheeseburger. Literally anything. But until then ice chips will have to do. I expect to have this tube for at least another day. Ugh.

 In happier news: I was moved to a beautiful private room yesterday and the staff is amazing. My pain management team and I, after trying a few different meds, have found what works for me and I am in little to no pain today. In fact, twice today I was able to get out of bed with a walker and walk across my room from bed to chair. Adam and my cousin Sara think I should challenge my 96 year old grandma to a race. I think grandma would embarrass me.

So please know that I am meeting my small milestones and doing better than expected! I’m feeling more in the mood for visitors so if were¬†are planning to see me please just give me a heads up. If you can, please do not come before noon. They tend to wake me up at 3 or 4am to draw blood and again at 5 or 6 to check my vitals so I’m trying to sleep later to get lots of rest in.

Thank you all again for the love! I am feeling an amazing amount of love and light holding me up through this. Thank you for also reading these absurdly long updates. I think it’s more healing for me to write them than for you to read them.

I love you all so much.

With gratitude,

Jess

An email update from Adam- post-surgery

Hi Everyone,

Jessy’s brother Adam here.

Jessy asked me before her surgery to send you all an update as she’s currently on some serious happy drugs (maybe she has been hanging around a bad crowd?), while she recovers.

Jessy entered surgery at roughly 4:30 and the surgery was complete around 10pm. ¬†The surgeon said he was very pleased with the way it transpired and she is doing fine right now. ¬†It went a little longer than originally expected but Jessica is doing well and she is expected to be out of the hospital in about 5 days. It’s obviously too soon to tell exactly when she will be back home, but they are already talking about getting her walking again tomorrow!

This is Jessy’s email chain so I don’t want to get into the specifics of what was done and what the next steps are as A) Jessy will have more specific information than me (apparently surgeons like to tell the patient more information than their BROTHERS, who knew?) and B) It’s way more fun for her to update you all anyways. ¬†We will all look forward to her next post when she’s back in action.

What I will tell you is that today is one of many victories for Jessica and we are very relieved the surgery went better than the surgeon originally expected.  My sister is a very strong lil lady and proved it once again today.  Of course, all of your loving support and encouragement has made all of the difference to Jessy and our family.  We can not do this without you.

Rest assured tonight that Jessy is well and in very capable hands.  We will do our best to keep you posted as we get more information and she recovers over the next few days.

Best,
Adam

Twas the night before surgery…

Thank you again for all of the love, warm thoughts and unwavering support. I am completely overwhelmed (in the best way possible) by all of the people that have reached out to show their support. I think one of the more important aspects of these updates is to let you know not only how I’m doing from a medical standpoint but how my spirit is as well. That being said below are a few of the things that I am most recently grateful for:

  • All members of my immediate and extended family have really come together and rallied for me. My brother even flew in from sunny California to be with me through my surgery. Last night my parents and I went out for my “last supper” and celebrated an early Hanukkah so that I would be well enough to enjoy it. I am also proud to announce that my brother quit smoking the night I was diagnosed and he is about 9 days cigarette free (best gift of all!). My mom is doing a sympathy clear liquid only diet with me today. It’s appreciated but I really wish she’d just quit and order a pizza so I can live vicariously through her. Thanks mom!
  • This past weekend my beautiful roommate, Kelly, spearheaded an incredible party for me. She wanted to ensure that I was able to fully enjoy my 25th birthday (that won’t happen for another month) so she threw a big early-birthday party for me and invited friends from all aspects of my life. I couldn’t have asked for anything better.
  • Complete strangers- I have been receiving messages and emails from people all over the country and in other parts of the world that have caught wind of my illness from friends of friends of friends. I am fairly sure that we have love and prayer coming from all continents except for Africa and Antarctica (can’t win ’em all!). It is unreal how much love exists in the world. The power of positivity will go a long way.

Needless to say- my heart is very full right now.

Tomorrow at 2pm I will be going under the knife (held by the super capable hands of Dr. Azodi at Yale New Haven hospital). When all is said and done I will lose a few organs, A LOT of pesky tumors, and gain a well deserved belly scar. It will be a great conversation piece at the beach. Many people have asked me if I’m scared. The answer is NOPE! Ok fine- maybe I’m a little scared but I would have done this surgery yesterday if I could. This is such a huge step in my recovery and if it means cutting me open and taking away what is making me sick, I say LET’S DO IT!

I anticipate being in the hospital for 4-8 days. I will make sure that my Mom keeps everyone informed as to how I am doing when I wake up from my surgery. I will also make sure you guys know when I feel peppy enough for visitors.

That is all for now.

Love and hugs