Moving forward

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.

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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

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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
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Bald is Beautiful…I guess

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.

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Chemo round 2 happens on Tuesday – bring it on.

Happy New Year lovely supporters!

I hope 2013 is treating everyone well so far. My New Years resolutions are to gain a few pounds and to be 100% cancer free. With a pint of ice cream under one arm and an IV of chemo drugs in the other arm, I’m well on my way.

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 🙂