Monthly Archives: March 2013

Things are shaping up for old Liz Lemon

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To continue my streak of positive energy, I have some great news to share! When I arrived at chemo this morning, my kickass chemo nurse Sheila couldn’t contain herself. Before I walked into the room she told me that she had just checked my tumor marker and my CA125 levels had come down from 60 to 34!!!! That’s major. Especially considering that I need to get  below 21 and have two full cycles left. I’m making giant steps in the right direction. This is a huge relief considering last time it only went down from 64 to 60. Even though it went down I was disappointed and worried that this great new treatment wasn’t working. All of the nasty side effects are worth this type of news. In other news, I gained 5 lbs wooo! I also start with my trainer next week.

all good things 🙂

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“Sorry for eating all of your cancer snacks” -Meesh

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I had the best weekend. I adore my chemo off-week. It makes me feel like a “normal” human being again (for a few days at least). As the weeks go on as much as the effects of chemo are cumulative and become more intense with each cycle, I am still somehow energized during my off weeks. It’s better to just roll with it and not question where this magical energy is coming from. I took it as a golden opportunity to have some fun. One of my best friends that I grew up with visited from NYC (Michelle to my right). Since one of my other best friends (Stacey to my left) now lives in Little Rhodey, we were able to have a Torrington reunion.

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And of course spend time with my Providence home girls…(clearly I need a new pose)

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On Friday night we went out and met up with the rest of my “providence family” and a few other wonderful friends and headed downtown to the bar. There was a live band and my leg has improved enough that I was finally able to dance without fear of tipping over. Per usual I was the most hydrated girl at the bar. Despite not being able to drink, I was still able to have a great time. It wasn’t too crowded, no one got too drunk, everyone was having a great time. I loved it.

Small nice moment in the RiRa bathroom: I was talking to Michelle and Stack about my wig and a girl waiting in line at the bathroom said “I was just about to comment on what nice hair you have! I would have never known that was a wig”. I guess my wig stylist was right- NAILED IT.

Yesterday I continued the T-town reunion and overall we had some good food and I pretty much laughed all day. This visit was good for the soul. OH and I had an unexpected huge appetite. I basically cleaned my plate at every meal (So Jeannette- if you’re reading this, I hope you’re proud since second to my mother you are most concerned about plumping me up).

Anyway- just thought I’d highlight a few good days in the midst of this cancer chaos.

Gearing up for round FIVE (home stretch!) of chemo this coming week. Cross your fingers for some favorable blood test results. I will accept any and all prayers to any deity! If you need to pray to a golden calf in order to get my CA125 levels below 21, do it (but don’t tell my Rabbi).

I hope everyone had a lovely weekend. Thank you for the continued support!

Do you suffer from male pattern baldness…

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Hello wonderful readers/supporters/people who were trying to google “male pattern baldness” and accidentally found my blog…

It has been over a week since I have last written because my life has been in a bit of a whirlwind. As you know from my last post, my grandmother passed away. Last week was a difficult week for my family and myself but the funeral was small and beautiful. I wish we could have gotten together under more uplifting circumstances but I am still glad that I had an excuse to be together with my entire family. As always, my superhero big brother dropped everything and flew into RI so that we could drive together to CT. Thank goodness he did because as they say- when it rains, it pours. After picking him up at the airport and getting home at 1:30am the night before the funeral my body decided to say “Oh you’re tired and in mourning? Screw you Jess, here is every side effect of chemo about to hit you riiiiiight NOW.” I was literally awake from 1:30 am to 5am violently ill. I then slept from 5-5:45 am and at 6am we hit the road for CT. Adam, being the best big brother that ever existed, gassed up my car, bought me vitamin water and a granola bar, and drove us both to CT after flying all day the day before. (SIDE NOTE TO ADAM SULTAIRE: Feedback on my blog has shown me that you’re popular in the polls with women. They are loving you to the point of fan club status. If this blog gets popular enough we might be able to score a VH1 style reality dating show)

Anyway- I survived a long and emotional day, as did my wonderful family. We are one less in the physical world but stronger than ever.

Since the funeral I bounced right back into work and chemo. Here I am “happy as a clam” during one of many infusions. I look pretty alert- the benedryl must have not hit me yet:

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Aside from some serious fatigue, the last treatment was fairly tolerable and nothing in comparison to the infusion the week before. I was actually feeling well enough to head down to Bristol, RI to attend a benefit for my dear friends the Cavallaro’s. Jen has been one of my biggest supports as she had cancer not too long ago. I am constantly in awe of her spirit and strength. She is a perfect example of someone that just takes what life dishes out and keeps on trucking. During the last blizzard her house burnt down- completely devastating for her family. Instantly her community came together and rallied behind the Cavallaro’s. A beautiful benefit was put together at Linden Place this past Sunday by three rockstars: Eli, Danna and Pam (with the help and donations of countless others!). The feeling of love and community in that room was undeniable. As always it is heartwarming to see people coming together through hard times:

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Jen, Chip, and their family have been like family for so many people including myself. They deserve every bit of love and support that they have received in this difficult time. Per usual Jen has a great attitude and is taking this as an opportunity for growth and renewal. We should all take a page out of her book when it comes to having a the right attitude in the face of adversity. Jen, Chip, Davina, Hartley and Pippa…I think of you everyday.

I haven’t talked about my leg in while. I suppose that means that no news is good news. It has come quite a long way in 3 1/2 months and I have almost reached full motor function…ALMOST. I can do everything except for walk up and down stairs. I am somewhat able to pull my body weight up with my bad leg but it requires a bannister and a prayer. I should be able to walk up and down stairs regularly sooner rather than later. Hopefully I will be running 5k’s again in no time…which brings me to my next point- the gym!

Last night I met with my new trainer Matt at Boston Sports Clubs. I am getting really excited about working with him and regaining my strength back. What I really loved about our consultation was that he has taken every piece of my recent  medical history into consideration and will not put me on the gym floor until he has spoken with my doctors, previous PT’s and OT’s and has a chemo schedule/other pertinent information in his hands. He gave me a list of questions to bring to my doctor when I see her on Monday, including: “how should Jessica cover her ports/most recent incisions to prevent a Staph infection?” I prefer someone that is cautious over a trainer that just jumps into our partnership head first without getting all of the facts. I think Matt will be a great addition to “Team Sultaire”.

Prior to meeting with Matt, getting ready to go to the gym and physically walking in the door was a pretty anxiety provoking experience. In fact, I almost popped an Ativan before I went because my heart was racing and my hands were shaking. Was it because I haven’t worked out in a while? No. Was it because gyms intimidate me? Nope. Why you ask? My bald little head. You would think by now I would be over the hair issue. Actually, up until yesterday I thought I was at peace with it. Evidently I am not fully over it.

I got dressed for the gym and found a workout top that covered my ports and scars well (phew). I wrapped my head in a scarf and just stared in the mirror. After months of hiding under my wig, I was in a situation where it was impractical to wear it and I had to leave the house without hair. I go bald constantly around my house and even to friends houses. In fact, my close friends John and Brian shaved my head recently and I didn’t have an ounce of stress over it. There is something about going into public in a head scarf that took me back to that moment where I feared the stigmatization of “cancer patient”. When I walked into the gym I had one of those movie-esque fantasy moments where everyone in the gym looks up and glares at me like I’m dead girl walking. My reality is that no one in that gym probably gave the fact that I was wearing a head scarf a second thought. Even though I can seperate my projections from reality, it didn’t make it any easier to do that for the first time in an arena where there are 1.) strangers who may make assumptions about me and 2.) strangers that I will see time and time again.

I better get used to it because I’m signing up for personal training twice a week. After grappling with how stupid this anxiety was overnight I decided that (in true Jessica Sultaire fashion) I can move beyond the anxiety if I can take control of it. So here it goes world: my bald fuzzy head-

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I know that no one is REALLY looking at me and thinking that I look like dead girl walking  (I prefer to think that I’m  just living dangerously- sounds more badass). But anyway if I can expose my George Castanza head in a VERY public forum (granted a forum where I can’t see the people looking at me), I think I’ll be able to wear a scarf to the gym somewhat comfortably.

On a final note-

I had a great day at work. Met with several really amazing students. I’ll leave you with what one of my sophomores said to me today. It was heartwarming and reminded me why I love the work I do: “I know that you leaving to take care of your medical problems is wayyy more important than helping me map out my classes but I just want you to know that I’m really glad you’re back.”

🙂 Ever grateful.

Grandma Esther (1917-2013)

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This morning my 96 year old grandmother, Esther Garbus, left this earth. Anyone who knew her would agree that she was nothing short of spirited and feisty. She fought to the end. She has been suffering for some time now, especially since the stroke and I am relieved that she can finally be at peace.

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She departed the physical world early this morning.  I was initially upset that she was alone when she passed but my mom reminded me that she preferred to do things on her own terms and that would include slipping away quietly. My brother agreed and appropriately borrowed one of Gram’s infamous lines: “She didn’t want to be picnic-ing around”. (I’m not entirely sure where Gram acquired this phrase but she used it frequently for as long as we can all remember).

I will certainly grieve this loss but find comfort in knowing that she can finally join my grandpa, Uncle Eddie, and Aunt Fritizie in life beyond this earth. I know she has missed them terribly. I’d like to believe for Gram’s sake that the afterlife is exactly like the New York City she remembered as a child growing up in the Bronx. Frank Sinatra is playing ‘New York, New York’ on repeat. I think she’d like that too.

To one of the most loving, vibrant, and generous people that I have ever had the pleasure of knowing- Esther K. Garbus, dream sweetly, you’re home now.

Chemo Round 4: 2 treatments down, 1 to go

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I have so far survived that past two days of chemo without nausea or vomiting (knock on wood). I have had IV nausea meds that will stay in my system for three days and they have allowed me to take a lovely little drug called Phenergan which worked really well to curb my nausea when I was in the hospital. Yesterday I pretty much slept all day through treatment and again when I got home but because of the steroids I was up all night. Luckily the steroids really make you feel invigorated (a nicer way of saying they turn you into an insomniac). As a result my room is now clean and organized. Chemo silver linings?

Yesterday I shared a room with a woman with breast cancer. The Benedryl knocked us both out for it generally made for a quiet chemo experience. The funniest part of the day was when it was time to leave. I didn’t have a ride home so the nurse was kind enough to call me a cab. For those of you familiar with Providence cabs you will chuckle to know that she called Big Daddy Taxi. Yup, the one that takes you to the Cadillac Lounge and to the Foxy Lady (Free admission to both if you use Big Daddy!). You better believe that the cab had a pegasus spray painted on the side of it when it rolled up to the infusion center. For a shady cab company, I must say that they are always prompt and friendly! Gotta love strip club owned cabs. I made it home safe for 7 bucks. I’ll take it.

Today was much more comfortable.  My friend Jen was kind enough to stay with me today (owner of the Bee Hive Cafe in Bristol. Eat there, it’s life changing). She was also kind enough to pick up Olga’s for lunch. It was most definitely a huge incentive to eat despite not having a big appetite these days. YUM.

photo-25 My chemo nurse was moving this week so I had a lovely nurse named Rosa. It worked out great because she was Jen’s chemo nurse during her battle with breast cancer. Rosa was very sweet and thrilled to see Jen. We even scored a great infusion room. I had a room to myself that not only had a window but a bed too!!! The chemo recliners are horrendous. Not to sound ungrateful but when you have to sit in one place for 6 hours to get poison pumped into you, you at least want to be comfortable. The bed was a pleasant surprise.

This weekend I’ll be focusing on no nausea, continued strength, and CA125 levels dropping. Remember 21 is the magic number. Pray for 21. As my friend Katie reminded me last night: “We’re not 21 but the sooner we are, the sooner the fun will begin” -Brand New. I thought at age 25 that I outgrew those lyrics but in this case- still relevant! Throwback Brand New for the win.

I’m back home now and looking forward to a low key, lazy weekend so that I can come back to work Monday full force.

Love & Gratitude ❤

“You’re doing a good job at having cancer” -Big Brother

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Some days Most days, I feel like my life is spinning out of control and I would like nothing more than to hide under the covers until its all over. Today is not one of those days. Today I feel strong, optimistic, and oh so grateful. So yes Adam, I agree that I am doing a DAMN good job. I mean look at me- rocking the shit out of that wig for my beautiful roomie’s 25th birthday this past weekend. Not bad for a “make a wish kid” (as one of my best friends so eloquently puts it).

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Today I had my scheduled pre-chemo exam with Dr. Robison. I am happy to report that she gave me nothing but optimistic news. She examined my abdomen and told me that she heard good bowel sounds and that it looked soft and normal. I haven’t had any abdominal pain since I left the hospital so it looks like the obstruction has resolved itself for the time being. I also asked her about my chemo schedule. If my CA125 levels continue to go down like they have been, normalize, and don’t start to creep back up there shouldn’t be any reason that we need to continue chemo beyond the scheduled 6 cycles. The goal is to get my CA125 levels below 21. Right now I’m down to 64 from 1600- woo-hoo! If I am able to stay on track with chemo as planned, I will finish chemo the last week of April. AMAZING. In terms of aftercare there are a few options but the one that Dr. Robison is leaning toward is a monthly injection that would help prevent a reoccurrence. The plan would be to have this treatment for the next year. This means that my abdominal port would come out at the end of chemo but my other port would need to stay in for a year. A small price to pay to be cancer free.

Due to the unpredictability of this disease I have learned that I can’t count on anything so I have to be prepared for everything. So much can happen in the next few months but after talking to my oncologist about where we are headed, I am truly starting to see the light at the end of the chemo tunnel. I still have three more, achey, pukey, cranky, miserable rounds but in a few days I will be more than halfway done! (At least it gives me an excuse to curl up on the couch with my amazing roommate and watch more Lifetime movies than we’re both willing to admit)

I don’t know how I would make it this far without the support and faith of everyone in my life right now (especially the Kaplan Clan this week 😉 You know what’s up). Cancer has taken away my ovaries, many organs, the ability to bear children, and my hair. Cancer has not and will never be able to take away the love and warmth that has surrounded me by family, friends, co-workers, acquaintances, and complete strangers. If I don’t acknowledge you in this particular post please know that you are NOT forgotten. The gifts, cards, messages and loving gestures will stay with me eternally.

I feel compelled to highlight my colleagues this time around because they have been so essential in this recovery process. I feel normal at work. I come alive at work. I’m pretty sure I smile more and worry less between the hours of 8:30 and 4:30 Monday through Friday. I am incredibly lucky to work where I do simply because I work amongst such thoughtful, understanding and inspiring people.This is a group that I have only known since July of this year yet without a second thought they have met with my students, run my reports, covered my presentations, fed me, made me laugh, hugged me when I needed to cry, visited me in the hospital, driven me to work, driven me to support groups, and in return I have driven them crazy 🙂 kidding! I think? I hope? Right guys? Guys…?

(I hope I am not embarrassing my office by posting this picture. Steph made it the Advising Office cover photo on facebook so blame her! Sidenote- The fine people of Academic Records, The Registrar and Study Abroad are not pictured but equally loved and adored)
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Sorry for all of the rambling (not actually sorry) but I want to share one more story while I continue my gratitude kick:

Since my diagnosis I feel like I have connected with people on a more intimate level. For example today I went back to my gym to reactivate my membership and inquire about personal training (It’s time to get jacked!!! Ok maybe not but some light exercise couldn’t kill me). I explained to the BSC staff member why I had to freeze my membership and that lead to me to spilling my guts about whole saga. It must have been fate that brought me to my gym on this particular night, at this particular time, to speak with THIS particular person because we instantly connected. It turns out that this girl has been through a series of unimaginable life challenges herself. Even though our experiences were very different from one another, it was as if our struggles granted us permission to open up and have a very human moment in a very unlikely setting.

The next time you open a newspaper and read about a shooting or international conflict remember that in the midst of such chaos this is still a kind and gentle world. I know this because I wouldn’t have come so far in this disease had I not been on the receiving end of infinite love and compassion on a daily basis.