Living well is the best revenge

As I stated in a recent entry, a clean CT scan doesn’t mark the end of a story. More than anything it merely marks the beginning of a new chapter. You do not just go back to your former pre-cancer self. You begin to process your experiences differently and in turn truly live differently. You are still you, just a better you (or maybe I’m just a giant narcissist). Cancer didn’t give me a magical power that others do not possess. It just gave me perspective.

As I have progressively improved my physical health, I’ve included a lot of pictures and updates in my blog about non-cancer related activities. It’s not because I’m doing anything especially wild or unique. I post these things because these normal, positive, uplifting experiences are what carry you out of that “cancer patient” role and into a “living well despite a bullshit disease” role. I want to document my experience in its entirety and for myself, it’s just as important to me to highlight the highs as it is the lows. Life with/after cancer isn’t always so bad- at least I still have a life to speak of.

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(This is legitimately the fortune cookie I got on Friday. Even chinese food supports my living well initiative)

So in the spirit of celebrating all things that bring joy to my life, here is a highlight from last weekend. My friends had a spare ticket to see Brad Paisley at the Comcast Center in Hartford. Do I have any interest in country music? Not really. Have I ever listened to Braid Paisley before? Not intentionally. BUT it was a great opportunity to spend time with good friends and who doesn’t like live music? Regardless of genre if you don’t like sitting outside in the grass on a beautiful night to listen to live music, it’s possible that you are soulless. Despite being exhausted earlier than I would like to admit for my age, the concert was great. Thanks Katie & Bobby!

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(The only real wrinkle in the night was when at the hotel I realized that I forgot to pack pants and was missing one sock. We had to take an emergency trip to TJMaxx to save the day. This mishap resulted in the quote of the night: “Wait- so you can beat cancer but you can’t even remember to bring pants?”)

In other news…

The minor surgery I had last week to remove my intraperitoneal port did not keep me down for long. I went back to work the next day, no pain medication needed, and by Monday I was exercising again. I want to take a second to thank Jacque for waiting with me pre-surgery until they gave me “happy medicine” and wheeled me into the OR. I would also like to thank Tom Tom Blythe for picking me up and Katie for facilitating the process (aka volunteering Tom Tom to help). Getting a ride midweek can be tricky because most people work a normal 9-5 so thank you for interrupting your day to help me. Anyway, the surgery went well and according to my Onc the catheter slid right out with no problem. I have a new scar to add to the collection and I’m good to go.

Physically I’ve been making great strides. This week my trainer is on vacation but my friend Brian was a rockstar yesterday and filled in. One thing that I have missed tremendously is running (I’m now thinking of every high school gym class that I cursed running). Last summer Brian was my running buddy and I was able to run farther and faster than I ever had before. Cancer and my left leg’s resulting stretched nerve kind of put a damper on my running and fitness goals BUT THOSE DAYS ARE LONG GONE! Yesterday we determined that my leg was strong enough to attempt a “test run”. Brian and I went to the Hope High School track and slowly jogged small stretches and walked on and off. Brian commented that at first my left leg was really stiff. It was as if I was jogging with a weirdo limp. It’s because it’s not totally there yet and I don’t trust it to support me fully. To help, Brian had me hold onto his arm while I jogged and having him as a spotter helped me transition into a more natural stride. Even though we looked like idiots, I was very proud of my bum leg and how far it’s come from December 5th when I walked two and a half steps with two nurse supporting me under each arm. Brian was kind enough to document my first solo jog:

(I was also nerdy enough to set it to music)

After our little jog session we hit the gym and I with the help of my substitute “trainer” I was able to add a few new things to my strength training repertoire. I bench pressed for the first time in my life. The bar alone was a little less than half my body weight so it was not easy by any means. At one point in time I would be too insecure to even attempt this buuuuuuut at this point, as long as the bar doesn’t fall on my chest, who cares? I bet I looked ridiculous but I took far more pride in the fact that I tried something new and succeeded. Brian was sneaky and captured me mid-fly. I am appreciative that he didn’t document how unflattering I looked bench pressing a bar (sans additional weight)

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All in all it is nice to feel healthy again.

Slice me open! Let’s do this.

I’m a bit behind on sharing with you all but my parents and I met with Dr. Robison last Friday to discuss moving forward. Decisions have finally been made!

1.) Despite my CA125 being in the 40’s she decided on no more chemo! The chemo served its purpose but the cells do not turn over quick enough to still be effective. At this point the chemo would do more harm than good. As much as I really liked hanging out with Sheila every other week, I will not miss the giant needles plunging into my chest and abdomen. I definitely won’t miss getting pumped full of liters of chemo drugs and saline and sloshing around with a swollen belly until I urinate 600 times in 24 hours to get it out.

This  also means that my abdominal port is coming out tomorrow! Another thing that I will not miss is feeling the end of the catheter moving around and poking me when I’m doing core work at the gym. I detest my chest port but at least the catheter doesn’t move around. That port will stay in for another year. They don’t want to be too quick to take that one out just in case anything happens. As I’ve mentioned before, it’s more functional because it has a blood return. They can take blood, inject contrast for a cat scan, give me fluids and IV drugs, etc. etc.

2.) My aftercare plan will be a drug called Letrozole. Letrozole is an aromatase inhibitor. This basically means that it blocks the production of estrogen in post-menopausal women. My doctor and her team strongly feel that my cancer was stimulated by hormones. Dr. Robison consulted with some of the best GYN/Onc’s in the country and they all agreed that this is the best course of action. So I was promptly taken off my bio-identical hormone replacements (because I don’t want to be giving myself estrogen/progesterone/testosterone if hormones are the root of the problem). I started my once daily 2.5 mg of Letrozole last weekend and so far so good. The only side effects that I have noticed are intensified menopausal symptoms like hot flashes. July and August aren’t going to bode well for me because I roast daily. I even keep an emergency stick of deodorant in my purse now just in case I start sweating profusely for no reason (real cute).

Other than the crazy hot flashes, I’ve felt great. The only other concern about this drug is that it impacts bone density. I just need to stay on a serious and consistent calcium/magnesium/vitamin D/weight bearing exercise regime.

3.) Until further notice I will have a check-up with my oncologist once a month. She will do a blood test monthly to monitor my CA 125 and HE 4 levels but she said that she will only tell me my blood test results every other month. She doesn’t want me to get too fixated on the numbers which I appreciate. If there is a huge jump and my numbers double or triple, she most certainly wouldn’t hide that information. If it fluctuates a little here and there but remains “stable” it should be of little concern as long as my CT scan is clear. I’m pretty sure that I’ll be having another CT scan in 6 months or  possibly sooner.

My parents and I left her office feeling really encouraged. We told Dr. Robison that she’s not allowed to retire…ever. She is honestly the best. Now that we could all take a big collective sigh of relief, we headed back to Connecticut for mother’s day weekend. We had a great weekend together!:

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I even got to spend a night with my she-wolf Michelle:

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And have a nice, wholesome, impromptu whiskey tasting over dinner with my parents and cousins (sorry liver):

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So right now things are pretty good. Work is great, I’m not totally terrified of my own body at the moment, I’m spending lots of quality time with friends and family, and I’m totally killing it at the gym (I did  a set of 15 perfect “boy” pushups yesterday. I’ve pretty much shouted it from the rooftops because I couldn’t even do that BEFORE I had cancer).

As always, so grateful. Thank-you.

So THIS is really what Cancer Purgatory is like

FIRST of all, Happy World Ovarian Cancer Awareness Day! (Thanks Em for letting me know! I had no clue)

This week is a confusing time for me. I am still happy about my clean CT scan but I spoke to my doctor on the phone yesterday and she told me that my CA-125 has continued to slowly creep upward to 48 from 42. Because this disease is such a mystery and MY case is even more uncommon it is really gray as to what this means. Considering that my CT scan showed no evidence of metastatic disease. My doctor is also using a second tumor marker called the Human Epididymal Protein 4 (HE 4) which like the CA 125 is used as a biomarker to detect disease in people with certain types of cancers like Ovarian. When she first met me in February my HE 4 was 39 and as of last week it is 30. She said that those numbers are not considered to be that elevated but to be honest I am not as familiar with this test and have no clue what a normal range would constitute. She is going to continue to monitor both tumor markers monthly to see if there is any correlation.

Best case scenario: The CT scan did not miss anything and these tumor markers are just not a good indicator for me (they are really not all that reliable. There are women with a CA 125 of 6 and their CT scans show disease. Conversely there are women with a CA 125 of 50 who remain stable. THIS is why we need to push Ovarian research!)

Worst case scenario: There are remaining cancer cells

Considering that my CA 125 is slightly elevated and slowly creeping upward this indicates that my body has essentially stopped responding to chemo. It served its purpose and was certainly effective but because low grade tumors do not have high cell turnover, it is not as chemo responsive. I was warned about this by my surgeon. Honestly, my oncologist is impressed that it worked as well as it did considering the unresponsive nature of those damn low grades. So, silver lining is that I officially will NOT have to undergo anymore chemotherapy.

So what’s on the horizon? I’ll have the official word when my parents and I meet with Dr. Robison on Friday but it looks like some type of hormone based therapy will occur like the pill Letrazole that I mentioned in my last post.

How am I feeling? Yesterday I had a strong reaction to the news about my tumor markers. It’s just so unsettling to not really know what is going on in your body when two measurements are giving you conflicting messages. I suppose I’m in a better boat with the CT scan being the test that came back negative as it is more reliable than the other tumor markers. Ideally I would have liked to have seen everything come back normal for peace of mind. I guess I just thought I would be in a different place at this point in my care.

Cancer is so unpredictable. It’s like having a boyfriend with borderline personality disorder.

Yesterday I got all of my tears out. Special thanks to my Mama, Dad, Brother, Krystal, “The wolfpack”,  Jacque, and Kelly for listening, understanding and reassuring me. It’s important to have friends that do not minimize how you’re feeling.

Facing your mortality sucks. You know you cannot go there in your head but some days you just cannot suppress the “what-if’s”. In the literature “favorable survival outcomes” could mean something very different to a doctor working with a 60 year old vs. a 25 year old. 5 year survival isn’t good enough for me. I plan on hanging around here for a very long time. So even though I have a clean CT scan I cannot help but think “Are there lingering cells? What if they explode and spread again? What will I do if I have a recurrance?  Will I have to deal with this forever? How long is forever…”

I know what you’re thinking, I cannot go there. You’re right.

 I could very well be fine and more than likely will continue to live a long and fulfilling life for many many many years to come. That’s the attitude I usually have. My mantra has been “I have too much shit left to do on this earth!” and I think I have done a good job of getting busy living in the face of disease. I need to work with my social workers on how to live with the uncertainty.

My brother brought up a good point by telling me that the only difference between yesterday and today is that I know my blood test results. NOTHING has changed and I was happy as a clam before yesterday. My roommate told me that last weekend was the happiest she has ever seen me. For a full week I felt fearless.

I think I just have to live according to the quote: “Fake it ’till you make it”

What else can you do?

This can only motivate me to live fully, with passion and with purpose.

“You didn’t beat cancer. You scared the crap out of it” -Matt

I haven’t sat down to write in over a week because per usual my life has been a whirlwind. In the past when there have been gaps in my writing, it has been because I was at a low or didn’t have the energy to articulate how I was truly feeling at the time. This time, I simply haven’t written because I have been too busy having fun and taking good care of myself!

First off I want you to meet someone very special. Her name is Sheila and she is my chemo nurse. Not only is she incredibly skilled at accessing my port and pumping me full of poison Taxol and Cisplatin but she has been there for me as a friend. This picture was taken immediately after learning the good news that my CT scan came back with no evidence of metastatic disease. I am so grateful for this little lady as she played such an integral role in saving my life and keeping me upbeat and positive through some of the most unpleasant parts of this experience.

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Most Recent Medical Update

In my last update I promised to have the final word on if I would continue chemo or move on to aftercare. Last Friday I met with Dr. Robison to discuss my CT scan and her recommendations moving forward. She was very happy to report that my CT scan came back with no evidence of disease. The only slight abnormality that showed up was a spot on my lungs but she assured me that it was nothing to worry about. Her and the radiologist were very certain that it was NOT cancer. It is more than likely evidence of an old infection or something minor. She said that because of my history of cancer (I have a history of cancer now…wow) they will continue to monitor it just in case. Dr. Robison told me that if I didn’t have cancer and this showed up on a scan, they wouldn’t have even mentioned it because it is that minor. If my oncologist and the radiologist aren’t worried, I’m not worried (which is odd because when you go through as much as I have, you worry about everything going on in your body).

Dr. Robison has a lot to consider with my case because 1.) my type of cancer is SO uncommon for a 25 year old and 2.) low grade tumors are also uncommon in general. You know me, I just had to be different. That being said, Dr. Robison is incredibly thorough and never jumps to make a decision too hastily.

Her Thoughts on CHEMO:

I had a blood test after my doctor’s appointment. Whether or not I have one more round of chemo would come down to what my CA 125 is doing. So there are a few possible scenarios:

1.) The CA125 drops into the “safe zone” under 21 = No more chemo

2.) The CA125 drops or elevates but is not below 21 = Probably one more round of chemo as an insurance policy

3.) (This one might blow your mind) The CA125 stays at 42 = No more chemo. I still do not entirely understand why this would constitute no more chemo whereas a drop to say 25 would. I imagine that this could mean that 42 is my personal normal so as long as it is stable then that is okay.

She thinks that more than likely chemo will not be in the cards but as I have said time and time again- there are no guarantees with cancer.

Her Thoughts on Aftercare:

She consulted with the tumor board at Women and Infants. They agreed that Avastin (immunotherapy, 30 minute infusions every 3 weeks for a year) may be a reasonable option. Dr. Robison also consulted with oncologists at the Dana Farber Institute and several other reputable institutions to see what other doctors are doing. There is strong evidence to suggest that another great option would be a drug called Letrazol. This is a pill that I would take every day for the rest of my life. I’m actually pulling for this option. Never did I think that at 25 being “on the pill” would go from birth control to cancer control.

I’m meeting with Dr. Robison and my parents on Friday at Women and Infants to hear her final decision. We shall see what my near future holds in a few days.

Time to get busy living…

So what have I been doing in the last week to celebrate my recent news? Smiling a lot more, sleeping a lot better, and savoring every second with my loved ones. Get ready for lots of pictures of my friends who are really, really,  ridiculously good looking 😉 (this is for you Jacque since you only look at the pictures anyway)

The night I announced my clean CT scan involved mexican food at Tortilla Flats, celebratory chocolate lava cake, dancing at Viva, and of course a champagne toast:

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This past weekend was B-E-A-UUUUUUTIFUL. We made the most of the weekend by spending as much time outside as possible. We had a lovely visit to Bristol and Portsmouth:

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IMG_2070 <–This is Stacey and she’s pretty darn amazing. She even made us matching celebratory t-shirts:

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We ended the weekend in the most festive way possible- celebrating Cinco de Mayo!

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All in all things are pretty good right now. Not to sound over the top and dramatic but when you have a brush with death you try to suck the most you can out of every opportunity to be happy. I’m trying my best to do that  and continue to surround myself with people that bring absolute joy to my life and let go of people and things that no longer serve me. I am also trying to say yes to opportunities as they arise and not be so afraid to ask for what I need.For example, because I have had to use so much sick time at work I felt really guilty about taking vacation days. I mean, I’m entitled to use them. I earned them. For some reason I had a ton of anxiety about asking for a little time off here and there go actually go on vacation. When I finally built up the courage to ask, my supervisor was more than happy to grant me the time off. In fact, she said I deserved it and did not even hesitate when saying yes. The pre-cancer Jess may not have asked but post-cancer Jess is building a little more courage and getting out of her own head a little more (ok, maybe not all the time but I’m getting there!). So now I have two great vacations to look forward to:

-July 3rd-8th: San Jose, California to see my big brother!!! I also have some west coast supporters that I cannot wait to meet.

-August 1st-5th: Minocqua, Wisconsin for my study abroad lake house reunion. Northern and Southern Hemispheres unite 🙂

This is going to be the best summer ever. Not taking a second of it for granted.

Thank you everyone for the continued support. It means the world to me.

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“I asked her where she wanna be when she 25. She turned around and looked at me and she said ‘alive‘”