I am happy to report that I had a wonderful and eventful long weekend in Providence. I was able to spend quality time with my friends, get a pedicure, shop, watch football and thanks to some of my favorite restaurants- eat like a queen. It was nice to sleep in my apartment and maintain as much normalcy as possible for an entire 3 days. Not too shabby I must say! Now I am back in CT for another week. I will have chemo #2 at Yale New Haven tomorrow and my plan is to return to Providence FOR GOOD when I’m feeling better from this coming treatment. My goal date to head back will be January 29th. I cannot wait.

Since I have written last a few things have changed. My hair is thinning tremendously. I was lucky that the hair held out long enough  for me to see my friends this weekend but it’s time to go. The amount of hair all over everything is unreal. I’m like a golden retriever. So as much as it pains me to shave it off this week, it is less obnoxious than having tumbleweeds fall on the ground every time I scratch my head. So to my hair- it’s not goodbye, just “see ya’ later”

The most important change is my oncology team. After tomorrow’s treatment I will officially be switching my care to Women and Infant’s Hospital in Providence. They are affiliated with Brown University (Apparently I only accept care from the Ivy leagues). I’ll certainly miss the kind souls at Yale New Haven like Sarah

Although I very much like my team in New Haven, this place had a much different feel. When we met with my oncologist she was very warm and extremely knowledgeable. She explained to us that she will be modifying my chemo regime. At first it was a huge shock because we figured that she would just carry on with what we have been doing. Currently I receive two drugs (Taxol and Carboplatin) intravenously once every 21 days. What Dr. Robison would like to do is give me Taxol and Cisplatin (Carbo’s “sister drug”) intravenously and through an intraperitoneal port (IP). She has shared the clinical research with me and explained it in detail. Clinical trials show that survival rates are far greater using IP treatment. This will require me to have another small procedure on February 7th to insert the port underneath my rib cage. I’m not thrilled to be having yet another invasive procedure but if it’s necessary to keep me on this earth then so be it. Basically for the last 4 cycles of treatment in 21 day cycles I will have Taxol administered through an IV on day one, Cesplatin through the port in day two, and Taxol again on day 8 through the port. Using the port will send the chemo drugs directly into my abdomen. Send the poison where the cancer is- makes sense!

I liked that she brought a social worker, and the facilitator of the young survivors support group into our initial meeting. It really showed me that they care about you as a whole person. I was later able to tour the facility. I was happy to see that my doctor’s appointments, infusions, blood work, support groups, and integrative services would all be in the same small building (only a mile and a half from my apartment!). Despite being a medical center, it has a warm and “homey” feel to it. They made sure to let me know that they have services like one on-one-counseling, dietary consults, support groups, massage, acupuncture, gentle yoga etc. It shows that they understand the importance and value of integrative medicine in battling cancer. When you have cancer you need to kill the disease, nourish the body, and strengthen the soul.  I feel confident that this team is capable of helping me do all three.

So this adventure will soon have some twists as I readjust to my “normal” life in Providence. As always I will keep you posted. Thank you for continuing to read my “novels”.

With love and gratitude,

Jess

It has been an intense few days mixed with both positive news and a few challenges.

I’ll start with the difficult part so this email can end on a more positive note. My 96 year old grandmother has suffered a major stroke that has impacted both speech and memory (intensified by Alzheimer’s). Her doctors are amazed that she can walk considering the severity of the damage to her brain. She is very much not herself right now. This has been a hard process to watch unfold but I’m happy that I can be with my parents during such a challenging time. If you can, please include my Gram in your thoughts and prayers. I hope she can find comfort and peace.

In more uplifting news, I had a check up with my oncologist on Monday. He said that I am healing well from the surgery. He is also pleased with my blood tests. They are monitoring my CA125 levels (a protein produced by several types of cancer). When I was first diagnosed my CA125 level was 1600 (alarmingly high). As of this week it is 98! The surgery and first round of chemo have brought it down significantly. The true test of if the chemo is working will be if this number continues to drop from treatment to treatment.

Finally, upon day 14 after treatment like clockwork my hair has started to fall out. It was coming out in handfuls in the shower today. Yes, I have beautiful wigs. Yes, it’s only hair. Yes, I’d rather go bald than die of cancer. But it still sucks and makes me feel awful about my physical appearance. I’ve already had all of my female organs taken from me and been hurled into menopause. This just adds insult to injury in terms of feeling young and feminine. I just need to mourn this loss now and really feel it so I can move on and continue to face this illness with strength and a good sense of humor.

I want to end by sharing a few hair-related acts of kindness.  Here are two pictures of amazing people that shaved their heads so I wouldn’t feel so terrible. I didn’t ask them to do this nor did I know about it ahead of time. I am blown away by the selfless gestures of these boys. The first picture is of Ricky, my buddy from MA. The second picture is of Billy, Mitchell, Chris, and Tim, 4 of my favorite Australians supporting me from all the way across the world. Additionally, my girl Jaclyn has been begging me for my blessing to shave her head but I won’t allow it because her hair is too gorgeous to waste! I appreciate the thought. Finally my dear friend Ashley from college is participating in St. Baldricks day with members of her vet school and reached out to me. She is raising money for children with cancer and shaving her head in April- so proud of her.

Chemo round 2 happens on Tuesday – bring it on.

I had my first chemo treatment on New Years Eve. It wasn’t exactly a walk in the park but it certainly was not as terrifying as I was expecting. The infusion center in the Smilow Cancer Center is a large room full of hospital recliners along the walls. There are curtains so you can have some privacy if you wish. I was lucky enough to have my parents and my brother there to stick out the six hour infusion with me. The woman receiving treatment next to me was watching telenovelas at full blast for hours. I think if I get on her chemo schedule we may become a bilingual family! Despite the long day, the treatment itself wasn’t terrible. You’re just hooked up to an IV for hours and the worst of it at the time was just feeling really thirsty- no big deal.

I didn’t feel too bad the next day; however, day 3 and 4 were fairly brutal. I was VERY fortunate not to experience nausea or a metallic taste in my mouth. On day 3 and 4 I was incredibly fatigued, my muscles ached, and I had very little appetite. It felt much like a terrible hangover that spanned over several days. The worst of it is the insomnia. They give you steroids the night before and day of chemo that stays in your system for a few days and does a number on your ability to sleep despite how tired you are. 10 mg of Ambien STILL didn’t put me to sleep- unreal. After a week of sleepless nights I learned that ZzzQuil and magnesium are a delightful combination for a restful night’s sleep. I have to say that if this is the worst of it then I will be in pretty good shape for future treatments (until my hair falls out…that may be a different story).

Last but not least my leg is coming along nicely! I was discharged from physical therapy although I will continue to have occupational therapy for a few more weeks. Parts of the leg are a little less numb and I am able to see more consistent full muscle contractions in the quad. For now I was advised to continue to use my cane if I leave the house but within the house I can walk around easily without it. Woo-hoo!

So far so good! I have much to look forward to now that the scariest parts are over. My oncologist has referred me to a great oncologist in Providence that will monitor my transition to treatment at Women and Infant’s Hospital. In a few short weeks I will be back in little Rhodey and back to work! February cannot come soon enough.

That’s it for now! Thank you for the continuous support 🙂

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 🙂

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

With love,

Jess

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

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 🙂 (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.

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.

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

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